A Brotherly Bond

Enjoy his heartwarming video of two brothers Conner, 8,  and Cayden, 6, Long,  who compete in triathalons despite Cayden having cerebral palsy.  Tom Rinaldi of ESPN’s E:60 really captures big brother Conner’s voice and why competing with his young brother is so important to him.

Inclusion – Good for Everyone, Including Siblings

Brooklyn with her classmates

I know it’s only the beginning of July, but the return of my children to school for the 2011/2012 school year has been on my mind for a while (if I am being completely honest since March).  March was a huge month for our family because it was the month we were asked if we would consider keeping Brooklyn at her current school and allowing the school to put her in a “typical” kindergarten classroom for this coming year. When we talk about milestones in our family, this was a milestone of gargantuan proportion. We were so excited about the opportunity that was presented, but anxious about what this next step would mean.

Inclusion is a welcomed word in the lives of families of children with special health and developmental needs. For me, giving Brooklyn every opportunity that she would otherwise have if she did not have CP is a primary goal. Brooklyn is a child first and foremost. She has physical limits, but she is still a child and needs to experience life as such. We have watched her grow this last year and she has loved every single day in school,every social interaction she has been given, and every chance to laugh, play and participate in activitites with her friends. Being in an all day classroom environment provides for this and so much more. Inclusion is not the answer for all families and depending on the needs of each child inclusion might not be an option, but if it is an option why not welcome and demand it?

Oddly enough, during the same exact month that we were given this choice, Austin Family Magazine published an article titled, “The Spirit of Inclusion. Embracing Special Needs Kids in the Classroom.” I know it sounds cliche, but I am a believer in everything happening for a reason and the timing of this in my opinion was absolute divine intervention.  Jennifer VanBuren does an excellent job focusing on the benefits that come from inclusion, not just for our children with special needs, but for all of the “typical” developing children that are lucky enough to experience this in the classroom.

My stance on inclusion has always been the more we can integrate Brooklyn into “normal” life the better for her and for our entire family. Reading Ms. VanBuren’s comments on the powerful molding that takes place in the lives of the other children in the classroom validates this even more. For Cameron (our typical) seven year old son and Brooklyn’s older sibling, the rewards are two-fold. Not only does he reap the rewards that come from having children like Brooklyn in his classroom, but acceptance, tolerance, kindness and equality are being learned by his peers making his journey with Brooklyn a little bit easier to navigate.

Of the numerous benefits the typical children in our schools (including our typical siblings) will receive, Jennifer VanBuren writes, “meaningful friendships, increased appreciation of individual differences, respect for all people, preparation for an adult life in an inclusive society, opportunitites to master activities by practicing and teaching others and greater academic outcomes” are at the top.  Isn’t this what we would hope all of our children to achieve during their school years as we work so hard to help them become successful, balanced and happy individuals? I would want these things for Cameron regardless of inclusion, so the fact that inclusion increases the chances that he will develop such postive character traits is reason enough to want this experience for him.

VanBuren writes, “ parents of non-disabled children may not fully understand the challenges families face or how much the smallest gesture is appreciated. One year a room mom innocently forgot a child’s name on the classroom Valentine’s list because he was not on the official roster. One little girl noticed and told her mother ‘we have to make one for Justin, he is part of our class too.'” What a heartfelt moment for any mother, and what a beautiful thing to see the care and concern of one child towards another.  As Vanburen would state “now that is the spirit of inclusion.”

This article touched me and confirmed the decision we had made to push forward with the regular kindergarten classroom for Brooklyn this coming school year. I believe in inclusion and I believe in my daughter. As soon as  I finished reading the article I immediately sent the link to the entire team that will be working with Brooklyn this coming school year, including the principal of the school she will be attending. We will be using this article during kinder camp next month as we introduce inclusion to the entire kindergarten class, their families and the kindergarten team of teachers.

I am excited to see where this opportunity will lead and the magic that is guaranteed to happen at Brooklyn’s school as those who interact with her are touched by the magnificent and smart little girl that she is. I am just as excited to see the road that will be paved for Cameron as the school community and beyond recognizes that the only thing that “disables” children like Brooklyn is ignorance. The sky is the limit for all of our children and Brooklyn is no exception.

Note: Permission to republish parts of this article was received from the editor of Austin Family Magazine.

It’s Summer – What Do I Do Now?

Eppele Family

Eppele Family

If you are a parent like me summer time brings with it mixed feelings. On one hand I am so thankful to have the opportunity to spend some “lazy” days with my children enjoying the lack of routine and hurried days, but summer for parents of both typical children and children with special needs can be extremely tough. Finding the time to balance the needs of all of our children during the regular school year is challenging enough, but adding days filled with hours of non-structured time proves to be difficult at best. As most parents of children with such extremely different needs are aware, we lead different types of lives than our neighbors and most of our friends. Not only do we lead different lives, we parent differently not because we want to, but because we have to.

 

Our lives are very opposite from our “typical” family friends and even some of the daily tasks that would otherwise be simple, end up being enough to zap our energy for an entire day. Everything we do takes extra planning and even tasks such as a trip to the grocery store or to get ice-cream at the neighborhood parlor has to be timed just right. We plan ahead for everything, decide who will stay at home or take care of our children with special needs if he or she can’t handle the outing, and we do our best to make sure that our “typical” developing children participate in functions and events, while also realizing that at any given moment we might have to cut our activity short.

We worry about our children with special needs, but we worry just as much if not more about our typically developing children. We feel guilty or regret the time that we are not able to spend with them and guilty about the time that we do spend because it never feels like enough. I have lost count of the times I have promised to play with my son, only to find myself having to care for our daughter with CP because her needs are more prominent at that particular time. I regret the times I promised my son I would bake brownies or read stories and have ended up not doing so because my daughter’s feeding lasted for an hour instead of the 30 minutes it should have.

Balancing the needs of both of our children is a problem that most parents in my world face. Time is precious and it always feels like time is being taken away from my typical developing son because the needs of my daughter with disabilities are so great. If we are lucky, we have family and friends who are willing to help. We have many wonderful neighborhood friends and family who stepped in and allowed Cameron to have a place to go to get away from the stress involved with living with a sibling with special needs. We have also been blessed to have many opportunities to spend time with Cameron alone, doing things together that his sister is unable to participate in. These things have made the world of difference in our lives, but I still struggle with days like summer or any kind of extended break from our normal routine to find activities for both of my children to participate in and places that we all can go together.

Most of my “typical” family friends have children who can play together for ample periods of time, children who can have conversations with each other, and children who are capable of keeping each other company during errands or trips. For our family these kinds of luxuries are limited, leaving me caught in a situation where I feel like I am constantly choosing which child will get my attention. I am also not afforded the luxury of spending a short chunk of time with each one of my children engaged in the activities that they each love and enjoy because my daughter requires assistance with every aspect in her life.

So how do you balance the needs of both children during the summer or any other time when routines and structure are more lax and children seem so much more demanding of your time and attention? I asked my fellow “special” mom friends to help me address this problem. While not fail proof, these suggestions will help turn what would otherwise be a very frustrating time into a time filled with wonderful memories and great sibling bonding time.

During Brooklyn’s traditional therapy appointments, Cameron and I use the time she is in her session to get ice-cream together or walk around the hospital grounds exploring and talking. Every moment that Brooklyn is occupied is an opportunity for me to spend some quality time with Cameron.

Summer is filled with plenty of opportunities for our “typical” developing children and our children with special needs alike. Like most families, our therapy schedule continues during the summer months. Our daughter Brooklyn participates in all of the “traditional” therapies, but is also involved in horse and water therapy. These two therapies I consider her recreation, and in summer I liken them to a camp that she would be participating in if she were “typical.” Cameron chooses one or two camps each summer that he would like to participate in as well, and we always try to make sure he has at least one friend participating in each of the camps. During Brooklyn’s traditional therapy appointments, Cameron and I use the time she is in her session to get ice-cream together or walk around the hospital grounds exploring and talking. Every moment that Brooklyn is occupied is an opportunity for me to spend some quality time with Cameron.

Even though routine and structure are hard to maintain during the summer months, I try to create some kind of plan (semi routine) for each week. My goal is to plan one “big” outing per week and many small mini-outings in-between to keep the kids from getting bored. One important tip is to plan activities that encompass the needs of all of your children, taking them to places that stimulate the mental and physical abilities of each child.

Trips to the pool are a must during the summer, and really help to pass the hours in the day. We try to plan trips with friends so that Cameron has kids to play with and I have the help that I need for Brooklyn. Many pools in the Austin area have great pool attractions such as water fountains and beach entry access for the little ones (or the ones with limited abilities). We enjoy visiting pools like these because I can sit in the beach access entry area with Brooklyn enjoying the fountains while Cameron swims in the deeper waters. Two recommendations for the Austin area are Veteran’s Memorial and Brushy Creek Splash Park.

Zoos and Aquariums are great ideas for trips that all of our children can participate in. There are some great museums in Austin, Dallas and Houston that are easily accessible and make for a great day or overnight trip.

There are many bounce houses in the Austin area that are great places to meet the needs of all of our children. Rolly Pollies in Bee Caves has open gym times that are great for allowing all children to play. Cameron runs around and plays while I help Brooklyn play. They have lots of great climbing and therapy equipment that can be used during this time. Hoppin House in Lakeway is another one of our favorite places to go. The owner has always been very sensitive to Brooklyn’s needs and has even gone as far as to give us our own bounce house for a short period of time so that Brooklyn and I can bounce without worrying about being trampled or bounced on. Cameron and Brooklyn both love to go here.

Many parents use errands to create simple “field trip” opportunities. One mom I know, Jamie Eppele,  loves taking trips to Target during the day because it “gets everyone out of the house and is social for all three of her boys”. She states that “getting iccees are a treat, and that they will walk around looking at and playing with various toys.” This mom finds that if she needs something to do, even a small trip to Target keeps her “typical”developing son going.  She feels that her son is alone with two special needs brothers and that taking small trips like this can help with the loneliness this situation can bring.

There are also many great walking trails around Austin that are accessible for both biking and walking. Cameron loves to ride his bike around the trail at Lady Bird Lake while I push Brooklyn in her stroller. One of my plans this summer is to buy a bike and a trailer that we can place secure Brooklyn’s Tumble Forms Seat in for bike rides together around the neighborhood and other flat surface trails in Austin.

Barkhuizen siblings

Barkhuizen Siblings

Finding places to go is a bit easier than finding activities at home to keep both kids occupied. In our family, we take lots of walks (in the early morning hours during summer). Dancing, singing, reading books, painting, creating art projects and baking are choices for daily activities that we can do together. Another mom I know, Rebecca Barkhuizen, has “picnics in her backyard, movie days or nights where everyone sits on the floor together, and we go for walks in the neighborhood or in the mall.”

One of our favorite activities during the summer is the Slip and Slide. Cameron runs and slides and we both take turns placing Brooklyn on her back and pulling her legs so she slides down. Brooklyn and Cameron love this and it gets them playing together.

Balancing time between both children is hard, and finding time to spend with both of them together seems like an endless chore, but the end result is priceless. This struggle comes with its fair share of exhaustion, worry and sometimes sadness (when we can’t just pick up and go like many other families we know), but it is also filled with great rewards and more opportunities for our children to enjoy their time together rather than having their time together ruined by the bickering that occurs with many siblings who are lucky enough to have the ability to do anything and everything together, but tire of one another because they are always together.

Finding places to go is a bit easier than finding activities at home to keep both kids occupied. In our family, we take lots of walks (in the early morning hours during summer). Dancing, singing, reading books, painting, creating art projects and baking are choices for daily activities that we can do together.

For all of the parents out there who find themselves asking the question “It’s summer, what do I do now?”, take a deep breath and take it one day at a time.  We are not expected to be perfect, and we certainly are not expected to know all of the answers or to promise that there will not be days where our typical children are feeling like we aren’t spending time with them. This is going to happen, but it happens in families who don’t have children with such extremely different needs. We need to give ourselves a break, give ourselves a pat on the back for making it through each day, and remember that our children have an advantage over children in the “typical” families we know. They will grow up to be helpers; they will be the understanding boyfriends, girlfriends and spouses; and they will grow up knowing not to take anything for granted.

Special Thanks to Jamie Eppele and Rebecca Barkhuizen for their contributions to this post.

Siblings Perspective- A Guideline for Parents

Siblings Perspectives: Some Guidelines for Parents

Contributed by Marci Wheeler M.S.W.

There is little doubt that those of us raised with siblings have been influenced by that relationship. Living with a brother or sister with an autism spectrum disorder adds more significant and unique experiences to that relationship. Throughout numerous accounts of parents and siblings of children with disabilities it becomes very clear; when a child in the family has a disability, it affects the whole family. Also clear is that families and each member can be both strengthened and stressed from this situation. It is the degree of these conflicting effects that seem to vary from family to family and person to person. There are some factors that have been found to help strengthen families and minimize the stressors. This brief article is meant to arm you with important information and practical suggestions for helping and supporting siblings.

Though limited research has been done, a child’s response to growing up with a brother or sister with a disability is influenced by many factors such as age, temperament, personality, birth order, gender, parental attitudes and modeling, and informal and formal supports and resources available. Certainly parents have little control over many of these factors. However, parents do have charge of their attitudes and the examples they set. Research by Debra Lobato found that siblings describing their own experiences consistently mentioned their parents’ reactions, acceptance and adjustment as the most significant influence on their experience of having a brother or sister with a disability (Lobato, 1990).

It is also important to note from Lobato’s research that a mother’s mental and physical health is probably the most important factor in predicting sibling adjustment regardless of the presence of disability in the family (Lobato, 1990). Positive outcomes that siblings frequently mention are learning patience, tolerance, and compassion and opportunities to handle difficult situations. These opportunities also taught them confidence for handling other difficult challenges. Research by Susan McHale and colleagues found that siblings without disabilities viewed their relationship with their brother or sister with autism as positive when: 1) they had an understanding of the siblings disability; 2) they had well developed coping abilities; and 3) they experienced positive responses from parents and peers toward the sibling with autism (McHale et al., 1986).

There are negative experiences of having a sibling with an autism spectrum disorder that should be acknowledged and addressed. Anxiety, anger, jealousy, embarrassment, loss, and loneliness are all emotions that children will likely experience. Because of the nature of autism spectrum disorders there are barriers to the sibling bond that can cause additional stress as a result; communication and play can be difficult between siblings when one has an autism spectrum disorder. Often the sibling without the disability is asked to assume or may on their own feel obligated to assume the role of caretaker. It is best to be proactive in addressing these issues. Siblings are members of the family that need information, reassurance and coping strategies just as parents do.

Each family is unique. There are various family structures such as single parents, multi-generational households, and households with other significant stressors including more than one member with a disability. Each family has its own beliefs, values, and needs. Regardless of family circumstances, the suggestions for parents discussed here should be viewed as supportive strategies that can be considered to assist siblings in coping with having a brother or sister with an autism spectrum disorder.

Twelve Important Needs of Siblings and Tips to Address These Needs

  1. Siblings need communication that is open, honest, developmentally appropriate, and ongoing. Parents may need to deal with their own thoughts and feelings before they can effectively share information with siblings. Children may show their stress through their withdrawal or through inappropriate behaviors. Parents should be alert to the need to initiate communication with their son/daughter. Siblings may be reluctant to ask questions due to not knowing what to ask or out of fear of hurting the parent. While doing research on siblings, Sandra Harris found that developmentally appropriate information can buffer the negative effects of a potentially stressful event (Harris, 1994).
  2. Siblings need developmentally appropriate and ongoing information about their siblings’ autism spectrum disorder. Anxiety is most frequently the result of lack of information. Without information about a siblings’ disability, younger children may worry about catching the disability and/or if they caused it. The young child will only be able to understand specific traits that they can see like the fact that the sibling does not talk or likes to line up their toys. School aged children need to know if the autism will get worse, and what will happen to their brother or sister. Adolescents are anxious about the future responsibility and impact of the disability on their future family.
  3. Siblings need parental attention that is consistent, individualized, and celebrates their uniqueness. Many families make a major effort to praise and reward the child with the disability for each step of progress. This same effort should be considered for the siblings even if an accomplishment is somewhat “expected.” Self esteem is tied to this positive recognition by parents. Remember to celebrate everyone’s achievements as special.
  4. Siblings need time with a parent that is specifically for them. Schedule special time with the sibling on a regular basis. Time with the sibling can be done in various ways such as a 10 minute activity before bed each night or a longer period of ½ hour to an hour 3-4 times a week. The important thing is to have some specific times with a parent that siblings can count on having just for them.
  5. Siblings need to learn skills of interaction with their brother or sister with an autism spectrum disorder. Sandra Harris & Beth Glasberg (2003) offer guidelines for teaching siblings necessary play skills to interact successfully with their brother or sister with an autism spectrum disorder. It is important to go slow and generously praise the sibling for his or her efforts. Toys and activities should be chosen that are age appropriate, hold both children’s interest and require interaction. The sibling needs to be taught to give instructions as well as prompts and praise to their brother or sister (Harris & Glasberg, 2003).
  6. Siblings need to be able to have some choice about how involved they are with their brother or sister with an autism spectrum disorder. Be reasonable in your expectations of siblings. Most siblings are given responsibility for their brother or sister with a disability at one time or another. Show siblings you respect their need for private time and space away from the child with the disability. Make every effort to use respite services, community recreational programs, and other available supports so that you are not overly dependent on the sibling.
  7. Siblings need to feel that they and their belongings are safe from their brother or sister with autism. Some children with an autism spectrum disorder can be destructive and hard to redirect. They can also be quick to push, bite, or engage in other challenging behaviors with the sibling as a target. Siblings must be taught how to respond in these situations. Generally this would include asking a parent for help in handling the situation. Parents should make every effort to allow siblings a safe space for important items and a safe retreat from their siblings’ aggressive behaviors. Thomas Powell and Peggy Gallagher offer ideas on teaching basic behavior skills to siblings (Powell & Gallagher, 1993).
  8. Siblings need to feel that their brother or sister is being treated as “normal” as possible. Explain differential treatment and expectations that apply to the child with a disability. As they mature, siblings can better understand and accept the modifications and allowances made for the brother or sister with a disability. For various reasons, parents sometimes do not expect their child with an autism spectrum disorder to have chores and other responsibilities around the house. Attempts should be made to make each child’s responsibilities and privileges consistent and dependent on ability. Be careful not to underestimate the ability of the child with the autism spectrum disorder.
  9. Siblings need time to work through their feelings with patience, understanding, and guidance from their parent(s) and or a professional, if appropriate. Listen and acknowledge you hear what is being said. Validate the sibling’s feelings both positive and negative as normal and acceptable. Repeat back what you have heard the sibling say and check for accuracy. Sharing your positive and negative emotions appropriately is also important. Remember parents are important models of behavior. Help siblings learn ways to cope with and manage their emotions.
  10. Siblings need opportunities to experience a “normal” family life and activities. If needed, draw on resources in the community both informal and formal. Some families are uncomfortable in asking for help. For the sake of everyone in the family, it is important to find and use resources available such as respite care services and other community programs for persons with disabilities and their families. Most families would be overwhelmed without some breaks from the ongoing demands of caring for children with a disability. Siblings and parents need opportunities for activities where the focus of energy is not on the child with special needs.
  11. Siblings need opportunities to feel that they are not alone and that others understand and share some of the same experiences. Parents should recognize the need for siblings to know that there are others who are growing up in similar family situations with a brother or sister with a disability. Opportunities to meet other siblings and/or read about other siblings are very valuable for most of these children. Some children might benefit from attending a sibling support group or a sibling event where they can talk about feelings and feel accepted by others who share a common understanding while also having opportunities for fun.
  12. Siblings need to learn strategies for dealing with questions and comments from peers and others in the community. Parents should help prepare siblings for possible reactions from others toward their brother or sister with a disability. Make sure the sibling has facts about autism spectrum disorders. Discuss solutions to possible situations. They may even benefit from carrying their own information card for friends which they can hand out as needed.

Siblings have a unique bond with each other which is usually life long. Having a sibling with a disability impacts this bond and will impact each sibling differently. The information presented here highlights some of the limited research and the most significant factors influencing a positive experience for siblings of a child with a disability. As a parent of a child with an autism spectrum disorder you can directly influence and support positive relationships for siblings. Just as you have learned to be proactive for the sake of yourself and your child(ren) with an autism spectrum disorder, siblings need you to be proactive in helping them, too.

References

Harris, S.L. (1994). Siblings of children with autism: A guide for families. Bethesda, MD: Woodbine House.

Harris, S.L. & Glasberg, B.A. (2003). Siblings of children with autism: A guide for families. (2nd ed.) Bethesda, MD: 2003.

Lobato, D.J. (1990). Brothers. Sisters, and special needs; Information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore, MD: Paul Brookes Publishing Co.

McHale, S.M., Sloan, J., & Simeonsson, R.J. (1986). Sibling relationships of children with autistic, mentally retarded, and nonhandicapped brothers and sisters. Journal of Autism and Developmental Disorders, 23, 665-674.

Powell, T.H. & Gallagher, P.A. (1993). Bothers & sisters: A special part of exceptional families. (2nd ed.) Baltimore, MD: Paul Brookes Publishing Co.

Wheeler, M. J. (2006). Siblings perspectives: Some guidelines for parents. Reporter 11(2), 13-15.


Wheeler, M. (2006). Siblings perspectives: Some guidelines for parents. The Reporter, 11(2), 13-15.

“Ignoring” Typical Developing Siblings

A Hand to Hold friend and supporter sent me the link to a blog entry responding to an article that was  published as the cover story for the New York Times Journal this past weekend. Just another reminder that raising a typical developing child while also raising a child/children who have extra needs is extremely challenging. Please read below and share your ideas with us.

Ignoring ‘Typical’ Siblings

By LISA BELKIN

The cover story of The New York Times Magazine this weekend (you can read it online here) is a riveting look at two 4-year-old girls — conjoined twins — who seem able to feel each other’s sensations and read each other’s thoughts. It is fascinating science. It is also a thought-provoking parenting story.

How to raise children who are so different, in a home where three other siblings have needs too? That question is writ large for the family of Krista and Tatiana Hogan, and faced every day by parents where one child is disabled, or ill, or particularly talented or depressed, or in need of extra attention for whatever reason.

As my colleague Susan Dominus writes of the five days she spent with the family:

Rosa (the girls’ 8-year-old sister) paused for a moment … then changed the subject (from something the twins had just done) to tell me about the part she had in a school show, playing “the nerd sheep.” Just once, could a visitor’s attention be directed at her own extraordinary role in the world?

At first, the sight of their younger sister, (3-year-old) Shaylee, walking freely past the girls, struck me as painful, a constant reminder of their own constraints, her liberty a moment-by-moment assertion of superiority. But over time, my sympathies switched: the twins’ unity was so strong I wondered if Shaylee felt she was somehow missing an essential part of herself. When the girls wanted to wash their hands in the sink, they worked as one, silently, to drag the bench over to the bathroom. More often than not, they both seemed to want to slither like snakes at the same moment, to roll a ball down a ramp to the television room, to drift toward the electric piano. But acceptance, rather than mutual desire, might be at play: the family often reminds them they have no choice but to compromise, and Simms believes they have a private logic for determining whose turn it is to decide their whereabouts.

The way this family handles the differences, it would seem, is by allowing them to merge with the surrounding chaos. Living in the British Columbia tract house with Tatiana and Krista are their mother, 25-year-old Felicia Simms, their older and younger sisters, their 6-year-old brother, their maternal grandparents, three cousins, an aunt and uncle, and their father, who seems to come and go. Dominus writes:

Simms has always appreciated what she characterizes as her mother’s easygoing ways. It was Louise who paid for her first facial piercing, at age 12, and who accepted the news easily when she learned her daughter was pregnant three years later. “We were never normal,” Simms says, and “that was O.K.” She thinks that in some ways it was easier for her family to accept the idea of conjoined twins than it might have been for a family that was more conventional. They did not have to reinvent their sense of themselves, the image they presented to the world. “In my house growing up, everything didn’t have to be perfect,” she said. “I never had to be like everybody else, look like everybody else.”

Unless the twins are having a rare health crisis or are being followed by video cameras (the National Geographic Channel showed a documentary about them last year), they are part of the general background din of the house and a far less dominant issue than the pressing financial concerns. The adults of the family tend to congregate around the long dining-room table, where the girls’ grandmother runs both a delivery business and the household — directing drivers, calling out to the twins to stop teasing their little sister and planning dinner for everyone.

It works for them. What works for you? How do you raise a child who is different while still giving attention to their siblings?

Please share your ideas with us.

Sibling Discussion Re-Cap

On Sunday May 15, twenty parents joined five panelists from the Austin community to discuss the unique challenges that siblings in families of children with special health and developmental needs face and to offer ideas to parents on how to support the needs of all the children in our families the best.

           

I was excited about this event both professionally and personally.  So many of my questions and concerns regarding my worries with my son Cameron were addressed and the connection I felt to all of the parents in the room was so strong. It doesn’t take much to make me feel connected to other moms who are walking down the same road I am with Brooklyn and with Cameron and being in a room with these women brings a certain amount of comfort and peace and the sense of knowing that they all “get it”. There is no judgement involved in what you say or express because everyone in the room has felt the same way at one point in time.

The panelists were wonderful and really took the time to answer the questions thoughtfully and thoroughly.  They talked to the audience about the common concerns faced by parents in this population, the developmental stages of grief and coping, communication with children, sibling rivalry and discipline as well as various ideas for helping children express emotion.

It was so comforting to hear the panelists talk about the most common concerns that parents like me face. I often wonder if I worry about things I shouldn’t be, or if other moms like me face the same daily struggles and hearing my concerns validated brought me peace. Among the many concerns parents face, the top triggers seem to be  balancing time between children, worrying if all of their children will fit in and planning for an uncertain future.  We learned that our “typical” developing children have many unique concerns as siblings, but that they also share all of the concerns that we as parents have as well. Panelists stressed that the most effective way to support the siblings in our families is to take the time to be there and to really LISTEN to what they are saying.

The discussion about the developmental stages of grief and coping was great. One false assumption by many people in society is that children do not grieve. Children of all ages grieve, it just looks different at each stage of development. For siblings of children with special health care needs  there is often this idea that they caused their brother or sister’s disability or that they might “catch” what their brother or sister has. Panelists shared that for this population, honest communication between parent and child is necessary. Panelist Khris Ford shared that for thirty years she believed that the death of her sibling was her fault because no one in the family talked openly about the death. Hearing stories like this is powerful and emphasizes the need for open and honest family communication.

I have struggled with sibling rivalry and discipline with my own children. We have found it hard to explain to Cameron why we don’t put Brooklyn in time-outs when she is biting or having a  tantrum. To Cameron (who is only 7) this is a big deal because his form of discipline when he was younger was sitting on the stairs for a time-out. He often

complains that this kind of thing is “not fair”. I have also struggled with the belief that every time Cameron acts it is the result of having  a sister with a disability. I guess I want to “blame” his misbehavior on the experience. The panelists reminded parents that these siblings, even though they have extraordinary life circumstances are just still “kids” and unwanted behavior is a part of being a kid. They stressed that as parents we need to deal with the symptoms and worry less about trying to figure out if what we are seeing is a “sibling” issue. Sibling rivalry happens in every family regardless of the needs of the individual children and all children need support because being a kid is tough.

The end of the discussion brought many suggestions for ways we can support our “typical” developing children best. Panelists suggested that we start with giving our children appropriate control, avenues for expression (such as art, music or journaling) and MANY opportunitites to meet other children socially who have similar life experiences.

What About Healthy Siblings?

As the parent of both a child with special needs and a typical developing child, one of my biggest worries has always been about how my son will handle his relationship with his sister and wanting to make sure that the experience he has growing up will change him in a positive way. As a parent I know that my journey with my daughter will change, and has already changed me in countless ways and I want to make sure that my son is supported as his journey continues. The very reason I decided to enter graduate school and pursue a family and child studies degree has been this desire to make sure my son is OK.  We have been lucky to have the support of friends and family over the last five years, but I have always felt that my son needed more- a group of people who “get it” where he can openly and honestly talk about his feelings, his experiences with his sister and the chance to make real connections with other children his age who are going through the same thing.

So here I am five years later, almost done with my graduate program and interning for an organization who supports my desire and my need to support the siblings in families just like mine. Hand to Hold realizes that the siblings in these families are impacted in numerous ways from different challenging circumstances and has given me the opportunity to begin working to make sure there are support programs and events in place.

One month ago we launched our sibling support program with a Sibling Celebration. Now we are moving forward with our second event this weekend. Hand to Hold offers quarterly discussion series free of charge to the community. This Sunday night we will be hosting a panel based discussion focusing on sibling needs. I am very excited about this event and know that not only will the parents attending walk aways with some great information, but I will walk aways with more peace and answers to questions I have had about my own journey for the last five years.

Stay tuned to a re-cap posting of this wonderful event. It is not to late to RSVP. Visit the Hand to Hold website for more information.

Parent Concerns

Although our experiences are all just as different as our children, there is a common thread that filters through the emotional journey of parents with children who have special devlopmental and health care needs. We all, regardless of our journey feel the same kinds of emotion and worry and those feelings are compounded when you factor in needing to support any additional “typical” developing siblings at home. Parents have many different concerns related to siblings but mixed among concerns of each individual family are very specific concerns that are heard time and time again. Dr. Scott L. Barkin from the Block Institute in Brooklyn New York writes that  the concerns of parents of special needs children with typically developing siblings almost always include

* As a parent, am I giving each of my children all the attention they need and desire, or am I neglecting my “typically” developing child?

* Will my typically developing child have to make many sacrifices?

* Will my children develop a relationship and will they play together?

* Will my typically developing child become resentful?

We may never be able to answer these questions and as a parent of a child with special needs and a typically developing child, I know that I have and always will wonder about these things. One of the greatest pieces of information I ever read regarding the issue of balancing time between all of your children is this-

Don’t focus on the amount of time being spent with your child, invest in the process of who the child is. Every child needs to believe they are understood, appreciated, regarded and acknowledged. What each child requires is to feel that he/she is different.

Although I don’t remember where I read this or who actually said it, it speaks volumes. I have used a phrase for some time now with my son when he tells me that things are just not fair. I always tell him things are fair they are just not equal. Being fair is all about getting what you need. This filters right into the issue of time spent with each child and being able to let go of the idea that every child needs the same amount of time from each parent. Just as my children each require specific needs in life, they each require a different amount of my time in order to feel that they are special and different.

Sibling Celebration Re-Cap

Hand to  Hold’s first Sibling Celebration was a HUGE success. Twelve families joined us on Sunday, April 10 for a party as we celebrated National Sibling Day. Our first sibling celebration was held at Cups and Cones in Northwest Austin and was a fantastic way to launch our new Sibling Support Program. Parents and children of all ages joined us as we listened to stories and rocked out to music played by Rudy Robertson. Children were dancing and singing andtheir parents were enjoying great conversations with Hand to Hold staff members and other parents attending the event. No party would be complete without great tasting treats. Parents and children were treated to ice-cream sundaes with lots of yummy toppings. Families from all over Austin including one family from Kyle, Texas joined us that day. It was a great time had by all. To top things off, Cups and Cones owners Kristi-Lee and Rick Nordin gave us a $20.00 gift certificate to use in a drawing for families. See more pictures from the Sibling Celebration.

I was touched watching the families last week and the interactions between the brothers and sisters. My heart was filled with joy by the many positive comments  (like the one below) that were heard on that day.

“I can’t stop smiling. I have had a smile on my face the entire time” Jamie Eppele- Mom to Jake (7), Luke (4) and Alex (4) both with spastic Diplegia.

Developmental Understanding/Coping

Developmental Understanding

Helping children cope with life changes and difficult circumstances is best done when we understand the development of children. As children grow, their understanding and their reactions change to having a sibling with health care needs.

6-12 Months (Older Infants)

During this stage of development there is an increase in separation and stranger anxiety. Babies may express their feelings through increased crying or clinginess.

1-3 year olds (toddlers)

During this stage of development children are extremely perceptive and can pick up on the stress of those around them. They have very limited language skills and will use regression as a coping mechanism. This is not a good time to introduce new skills such as potty training.

3 to 5 year olds (Preschool)

During this stage of development, children are unable to adequately express their feelings verbally and are likely to express them through behavior. They are not able to understand the special needs of their siblings, but they will start to notice differences. This is the literal stage of language development and children will use both regression and attention seeking behaviors to cope with stressful situations.

5-10 years old (school-age)

During this stage of development children become acutely aware of differences.  It is the concrete stage of cognitive development and explanations can be understood in proper terms.  They might worry is the disability or illness is contagious or if something is wrong with them to. They may feel guilty about having negative thoughts or feelings about the sibling as well as guilty about being healthy or not having a disability. Some children at this age become overly helpful and well-behaved while others become non-compliant to get attention.

10-13 years old (pre-teen siblings)

Privacy is extremely important to children in this stage of development and they are extremely perceptive. They might struggle with increased responsibilities or might want to assume more responsibility than they should to keep additional stress away from the family. Social networks are very important and may wonder how their social life may be affected by their sibling’s disability or illness. They may experience embarrassment surrounding their sibling and they may worry about their sibling’s future as well as their own.

13-18 years old (adolescents)

Teenagers are capable of understanding more in depth explanations of the disability and may ask detailed and searching questions and want their opinions and thoughts to be valued/viewed as important. Social networks are very important and they may wonder how their social life if affected and where they fit in. Since conformity is important, they may feel embarrassed about having a sibling who is different.  They may resent an extra responsibility and worry about their sibling’s future or theirs.

Site last updated May 23, 2017 @ 3:00 pm