Family Dynamics
They call it the “after the diagnosis” phase. Even today, almost 12 years ago, I still have a sinking feeling in my stomach as I remember the explanation the doctor gave to us about our son’s diagnosis. I vividly remember the many different feelings and strong emotions exacerbated by confusion, frustration, and the feeling of helplessness. I remember panicking about what to do and that we were feeling all alone. You may remember or are going through these feelings right now. I wanted to write this article for you and to share that there are many sources of support and services for families of children who are visually impaired. I want to encourage you so that you know you are not alone and there are other parents and families out there who want to connect and partner with you as you start this new journey with your child and with your family.
No matter what age your child is…infant, toddler, pre-schooler, elementary age or teenager, the realization of visual impairment for your child is a shocking event for and your family. It affects all aspects of your family. Many people don't realize that having a special needs child is a whole family impact. Many marriages fall apart because one or both of the parents become so hyper-focused on treatments, hopes for a cure, or even the daily tasks of meeting their child's needs, that they forget they are a married couple. They forget to go out and have dates. We went years without doing anything special except focusing on our son’s disability. Even when we would go out, we still spent most of the time talking and strategizing on what were the next steps. We would forget to go out and do things together, just as two people, rather than as two parents.
This also affects other family members, specifically the siblings. The amount of time and energy that parents spend with their visually impaired child is huge. They are focused on teaching concepts which would otherwise be learned incidentally or demonstrating self-care and home management skills. Also, they are continually addressing accessibility concerns, visiting specialists, and participating in educational planning meetings—all so very necessary. Let’s not forget the innocent and concerned response to questions of neighbors, friends, and family members. Siblings can easily feel forgotten or valued less. Siblings can feel bitter or jealous. Sometimes, siblings can feel afraid or even embarrassed.
There are 1st and 2nd order impacts. First off, we found that just the nature of the disability required significant attention and time towards our special-needs child and less time spent with siblings. This perceived difference in attention often manifests itself with the other siblings. The spectrum is wide – from “acting out” to grab additional attention to reclusion and depressed feelings, and requires significant parenting on top of the worries and concerns for the special-needs child. Some of the second order impacts we’ve seen are in the areas of what I call family-security. Often, the children feel that this huge change in the family and the focus of the disability challenge the comfortable feelings of security that a child has in his home and in his family. Sometimes the siblings feel forgotten or overlooked. Teenager siblings may start to spend time with friends at school or outside the home where they can more easily feel engaged or “needed.”
Financial impacts within a special needs family also may exacerbate the family dynamics. Whether it’s a financial “tightening of the belt” across the board or specific focus on necessary costs for the special need, the additional stress is huge not only between parents, but also felt across the whole family. Also, often times the helpful siblings are asked to carry a lot of the household responsibilities or workloads as they see their parents focused on the special needs of their brother or sister. While this is necessary and the teamwork of a family does bring close bonds, careful monitoring is important to ensure that the assisting siblings are thanked and encouraged for their “extra” help.
While we are still on this journey and often struggle even after decade, we would never claim to be experts and I wanted to humbly share some thoughts that may help with these family dynamics:
Remember that the siblings can get lost in the shuffle. This escalates exponentially with the combination of both time and financial going into the child who has a disability. With so much going on, it’s easy to forget and it's important for parents to remember to spend one-on-one time with all of their children, and to make sure that the non-affected siblings are getting all of the attention and help that they need as well.
Realizing that others have already gone through what your family is currently experiencing helps with the feeling that the walls are closing in as you struggle with all that you have to help your child. I have been encouraged by the efforts of other Moms and Dads who have paved the way ahead for me. Finding groups to connect with on websites, Facebook, and other social media can help provide solutions, answer questions, and spark new ideas.
Organizing and modifying your home. Understanding that you want your family to feel comfortable and safe at home may require evaluating your home in order to protect your child with visual impairment. It doesn’t have to expensive or difficult, and there are many useful adaptations one can implement to consider lighting, glare, color, and contrast as well as safety modifications to prevent falls or injuries. For example, marking the edges of steps with brightly colored tape or paint to make them easier to see. There is a lot online resources to assist with how to make room-by-room changes throughout your home.
It’s hard to treat your children equally with neurotypcial children; even harder with a child with special needs. However, the perception of fairness can come from having the same expectations. For example, if you are a parent that has your children help with chores, make sure your visually impaired child helps, too. Expect your visually impaired child to do their share of the work. This can require some “outside of the box” thinking, creativity, or some adaptations on how you structure chores, but a family chore list where everyone does chores and tackles the workload is key. This is not only important to avoid sibling rivalry, but it's simply a good life-skills education.
Help your visually impaired child learn how to interact with their siblings. Social interactions are often learned visually when a child is young, and understood faster by those with sight. Children who are blind or visually impaired most likely will have to be taught how to be polite and what is appropriate. This can be a team effort with your school’s IEP team. Your child's teacher of the visually impaired (TVI) and special education/case manager can help with this in the school setting. Let your whole family know you have the same expectations!
Family activities that are fun for everyone. This has been one of our biggest challenges. We have an adventure park that is nearby, and based on the doctor’s assessment of a fragile retina, the sharp vibrations of the roller coasters was ill-advised. You can imagine how hard it was and heart-breaking looks my son gave me, when I told him he couldn’t ride the roller coaster. Our plan for overcoming was the arcade and a large ice cream cone while the other boys went with Mom on the roller coaster. While finding “fun for everyone” activities is difficult for all families, regardless of who their children are because every kid is different, we know that family activities are the most fun when they are fun for everyone. Before planning a vacation or even a game night, consider all sides. Make sure everybody gets a turn to pick an activity because the appearance of favoritism may negatively impact what you are trying to accomplish with family fun for everyone.
Compassion comes from understanding. Understanding often comes from first hand experiences. It is hard to know what being blind or visually impaired is like all day, every day. Inclusion with your sighted siblings can really help. We know that children who are blind benefit when they can be included with their peers, which means their siblings, too. What about inclusion for your sighted kids. For example, if you are working on braille or cane skills, teach the siblings, too. Having them work together on homework where an iPad can be used to blow up homework questions for a visually impaired child helps the sighted child to understand the efforts needed to simple reading tasks. Knowledge about anything blindness related or with visual impairment will certainly lead to greater understanding and possibly shared interests.
“Be an Open Book.” Being available to answer questions and explaining your child's diagnosis with all the children in your family will open discussions. Don’t wait until the children are older as the issues and concerns are now. Make it age appropriate, but plan to start with the basics and continually provide them with more details or information as they grow to facilitate a strong understanding. Visual impairment will be something common in your home so that it isn't feared and everyone is comfortable with it. Each child will realize that it is just one special aspect of your family and not the thing that defines anyone in the family.
Written by Chuck Walls, Parent and PRRF Board Member
Resources:
FamilyConnect - Adapting your home
FamilyConnect - After the diagnosis
Finding Your Child’s Passion - Our Story
This is Part II of the Family Dynamics article with a focus on families with a visually impaired child who is middle or high school aged. I fully understand that visually impaired children can have learning problems that range from mild to severe, and that their educational needs and accommodations will depend on many variables: the nature of their disability, special needs capabilities of their school, experience level of their special needs educators and case managers, and last, but not least, the family dynamics.
Under the American Individuals with Disabilities Education Act (IDEA), visually impaired children are entitled to a "free and appropriate public education." However, this does not mean that every school is ready, trained, educated, equipped, etc. for each visually impaired child’s unique special needs.The parents will have to advocate and model this advocacy for your middle schooler / high schooler so they can learn to advocate for themselves as one day they will be adults. Furthermore, it is better to teach them to advocate for themselves earlier than high school graduation. For our family, we learned some hard lessons with case managers who expected our son to advocate for himself and didn’t action accommodations initially. We had to become involved as the last thing our son wanted to do was to be spotlighted in class advocating for seating closer to the whiteboard with his regular teacher in front of all his peers. Highlighting himself as needing special treatment or that he is a “SPED” kid was absolutely the last thing he wanted and he refused to advocate; he was willing to not be able to see the board or LCD screen, not understand the concepts, and then it became a slippery slope that included not turning in classwork, and then homework, and ultimately failing the test. What the case manager didn’t understand is that every kid is different and while we did agree that learning to advocate is incredibly critical, it’s the training of each kid to advocate that needs to be tailored and the best way to get their buy-in. In our situation, we went back to the IEP team and asked for all the teachers to attend so we could discuss our son’s special needs, the importance of discreetness in discussing the accommodations for his disability, and how the accommodations could be implemented with the least amount of noticeability by his peers. We also made sure that verbiage was added to the IEP, so that the special education teacher would check in with the regular teachers to remind them of how to best implement the accommodations discreetly.
Historically, as early as 1944, researchers were examining how parents of visually impaired infants responded to diagnoses about their child's disability. The researchers concluded that parents needed ongoing support during the early years, as they and their families had to learn how to live with a visually impaired child. Additionally, it was found that parents with children with visual disabilities struggled to see an endpoint resolution of their problem. “Instead of a progression of emotional stages, moving from shock towards acceptance, there is actually an ongoing mourning process, typified by both recurring bargaining ("If I just do____, everything will be okay") and depression (crying, feeling lost and alone).” I feel that this is sometimes exacerbated by guilt and hurt especially when our visually impaired child is compared with normally sighted peers.
There are other problems that can arise in a family when parents downplay that a problem exists, or overprotect their visually impaired child. Problems within the family may arise if parents deny that a problem exists, or overprotect their visually impaired child (i.e., do not allow him/her to achieve independence appropriate to his/her age). Parents who deny the severity or impacts of the visual impairment often close their ears to positive suggestions and may interfere with intervention strategies. Over protectiveness insulates the visually impaired child from the real world that he or she will be living in for the rest of his/her life.
Within the family, the stress of delays in developing skills for our child impact not only parents, but also siblings. These developmental milestones can occur later due to lack of learning through observation or a decrease in motivation to move without clear sight. Sometimes comparisons with other siblings help to identify the specific delays, but often highlighting these same delays affect the security, self-esteem, and emotional stability of the visually impaired child. As they grow and mature, by middle school or high school this downward spiral of “can’t do’s” can cause depression, avoidance issues, and in many cases anger and bitterness.
What is a family to do when depression hits, parents feel like they cannot fix the problem, siblings do not know what to say, and the visually impaired child is bitter? For our family, we kept trying to find things that our son could do. He couldn’t play baseball or football or any contact sports as a head trauma injury with Retinoschisis could lead to blindness. We thought of golf, but the ball is so small he’d never see where it went. Tennis was a close game, but he wasn’t interested. We tried swimming, and then track, but he would turn purple in the water, and totally hated running. My wife and I felt like we needed to keep looking for an activity that he could do and that he was interested or passionate about. I noticed that in middle school, he liked military things and since we are a military family, it was heart breaking when he found out his visual impairment wouldn’t allow him to be a soldier. But in my heart I knew he liked shooting and military tactics, so we got him involved with airsoft….you’re probably thinking—“that’s crazy, an airsoft BB could put his eye out!”….and you are right. So we found protective masks that he could wear his glasses underneath and purchased him an airsoft gun, and then went to some airsoft battlefields…he loved it and soon knew everything about airsoft tactics and airsoft guns. It was so exciting to see the spark back in his life. When he grew out of airsoft in high school, we realized he had a natural mechanical aptitude and liked working on engines. We bought him a toolbox at Lowes and he started working on my old pickup truck. Pretty soon he was changing spark plugs, replacing the radiator, fixing the brakes, etc. He would spend hours fixing up the truck and he’d use you tube videos on his phone that he could blow up to learn how to do each repair. Then we got him an old used dirt bike, and he started working on that as well. I had to remind him that he had homework to do also, so he would not spend all his time in the garage. While I would have never thought this is the path we would travel even three years ago, I can tell you that supporting with ideas linked to a child’s passion and sprinkling it with encouragement helped to grow our son’s confidence, self-esteem, and purpose during his high school years.
It is so important for the visually impaired child to feel "accepted" within the family. Being treated "like the other kids" builds this feeling of security. The child's self-image and self-esteem are closely related to the value he perceives to add to the family. Naturally, nurturing parents are good for all children, but crucial to visually impaired children. Encouragement in the child's achievements can build a sense of accomplishment and allows for parent - child bonding to take place. Furthermore, on-going family support can help resolve miscommunication issues, and ensure the necessary bonding between child and parent.
The following bullets list 4 areas for parents to focus on in supporting their visually impaired child within the dynamics of the family environment:
Educate oneself. Learn all you can about your child's disability and the options for treatment and education. Look at other articles on websites, social media, and seek out relevant information from government and nonprofit organizations that offer resources for families of visually impaired children.
Build a support system. Seek out other parents of visually impaired children. They will be a wonderful source of information and support. Ask your doctor or learning specialist for referrals to parents' support groups in your area.
Take care of yourself. To avoid stress and burnout, be sure to make time for yourself, and for the friendships, relationships, and activities you enjoy.
Take care of your relationships. Having a child with a disability can put pressure on your marriage and your entire family. Nurture your relationship by having frequent dates and private time together. Don't forget your other children, too. Be mindful of the time you spend with each child. They will remember the time spent with each of the siblings. Schedule regular one-on-one time, and keep up with their interests and activities.
Finally, as parents, how you consider your family dynamics and what you do to influence it will drive how your family travels together on this journey. You can use family dynamics to positively affect your visually impaired child as well as build an amazing family support team that mutually supports through the difficult times in living with visual impairment.
Written by Chuck Walls, Parent and PRRF Board Member
References: