If you would ask parents what their greatest challenges are, many of them will mention managing the family’s time, energy, and resources. This becomes an even greater challenge in a family with a child with a special need. In a special needs family, there are numerous doctors, therapies and insurance phone calls demanding the parents’ time. The child’s needs for care might be time consuming, physically and/or emotionally taxing. There are endless worries and concerns. So, how does a special needs family operate and have some type of “normalcy?”
In preparation for this article, I asked this question to an online forum of special needs moms. The resounding answer was that we must redefine our expectations of “normal” or possibly just forget about “normal” altogether. Our family life won’t ever operate in a way that we think is “normal” or the way we might once have expected, but we can have a healthy and satisfying family life. We can have a nurturing home environment where we strive to meet every member’s needs, even while we are meeting the intense and often numerous needs of our child with special needs. So, amid doctors, therapies, IEPs, sibling needs and a million other things, how is this possible? One four-letter word: H-E-L-P !!!
Needing help was a very difficult thing for me to face. I felt as a stay at home mom, I should be able to care for my son who has special needs and the rest of my family and that, if I couldn’t, I was a failure. I also felt that no one else could care for my children as well as I could. What I learned, though, was if we are honest about our need for help and if we share our son’s care, our whole family benefits. My son has many people who love him and know how to care for him. Each person brings different and wonderful things into his life. When he is being nurtured, challenged and loved by these caregivers, my husband and I have time and energy to spend with each other and our daughters. His caregivers become a team that rallies around him (and our family). They cheer us on when he is making great progress or when he is ill. They encourage us when the responsibility feels too big and exhausting. They step in and lend a hand when we are weary.
So, how can a family find good help so that they can work on creating a functioning, nurturing family life?
- Be honest and open about what you need.
In our family’s life, I have found this to be the number one way to get help and problem solve difficulties that don’t have a simple answer. I share our challenges and concerns that I have with our son’s therapists, social workers and caregivers. Many times they only listen, but I find that when people come to care about our children and know our challenges, they want to help. Sometimes that help comes in the form of quiet support and listening ear, suggestions or a connection to a helpful service. And sometimes the help is more personal.
Unlike therapists, social workers and caregivers, our family and friends often have a very limited understanding of what our day to day challenges are. They don’t understand how difficult an over-stimulating environment can be. They aren’t aware of how long and how time consuming it can be to feed and give drinks to someone who puts nothing to his own mouth. They don’t understand that while it is frustrating and exhausting to stay up with a typical child who is sick, with our child who has special needs, every time he is sick we have the added worry that this could land us in the hospital or even be life-threatening. So gently, lovingly and with respect, we have to share some of this with them. They cannot be expected to understand something that we haven’t ever shared with them. The more that we share our experience, the more they will begin to understand.
- Let family/friends help.
This can be difficult, but family and friends want to help because they care. It is very important when you accept this help that you are clear about needs and expectations. Misunderstandings caused by lack of communication can make family life harder rather than easier. If we begin with clear understanding on both sides, the situation is far more likely to be positive.
We have been clear about our son’s needs from the beginning and most of our family does not feel comfortable or able to care for him. They love to spend time with him when we are there and can be responsible, but find his cares along with his body size to be too difficult to manage. They prefer to do other things for us to help. I could choose to be insulted or upset about this, but we do not want to leave him with anyone who doesn’t feel confident about caring for him. I have them help us in other ways and I provide lots of opportunities for them to spend time with him when I am also with him. He is very loved by our family and they nurture him and spend many wonderful hours with him. When they are with him, I can do dishes, read with my girls, bake and do other household things. All the while I know that he is playing puzzles, listening to singing or books and being paid lots of attention. It is positive for all of us.
Don’t forget to thank helpers appropriately. Be as honest with them about what their help means to your family life as you were about your need for help. Allowing them to help and telling them what their help has meant to you is a blessing to them. Don’t just tell them once. If they help you often, thank them often. They have changed your family’s life!
- Know what services your child is eligible for and utilize any that will help.
Our son gets respite care paid for by the state. This makes it possible for our family to go to piano recitals, sporting events and other places that are fun for us, but a sensory overload for him. Sometimes we can bring his respite person along so that all of us can be together at an event so that his needs are taken care of so that we can participate more fully in the event.
Many children are eligible for nursing services, home health services or special therapies. Utilize these if they might make your life easier. Sit with your social workers and explore all of the possible services that your child could be eligible for and think honestly about whether they might ease your parenting stresses a bit. Sometimes an hour or two (or four or six) of brainstorming or phone calling can result in many years of a helpful service.
Don’t be afraid to ask for new social workers when necessary. Social workers are so important in our journey. If you have a social worker who isn’t willing to help you problem solve or to brainstorm, then sometimes it is necessary to ask for a new one. Remember, our relationships with special service agencies are often long relationships. Be kind and respectful – even when advocating for change.
- Build a team for your child of trustworthy and invested caregivers.
Finding good caregivers is difficult. There are services that you can utilize and I know many parents who use them and have had great results. We have made it for 6 years of our son’s life by following tip #1 above. We build our son’s team by word of mouth. Every time that we have needed a new caregiver, I just share with everyone we know- doctors, therapists, friends, relatives, current caregivers, teachers, nearby churches and Facebook. We usually have college students, nursing students and therapy students who are just wonderful with our son. This is mutually beneficial, not only because they get paid, but they gain valuable experience for their future profession. I have had them come along to therapies and doctor appointments when they feel that the experience would be helpful for them. We love the extra set of hands and they are thankful for the chance to learn and grow.
And again, don’t forget to thank helpers appropriately.
- Find ways to network with other parents who have children with special needs.
Other parents who have walked a similar road are an incredibly valuable resource and support. They often have experience with challenges that we are currently facing. They know the routes to take and the ones to bypass. They have already made connections that we might need. They are the best listeners to our challenges and they feel our victories in ways that only another who has “been there” can.
Finding ways to share your family life and the care of your child with special needs will make it possible for your family to have a healthy, satisfying family life! It will create a team that loves and supports your child. Your family will be strengthened and you’ll have the opportunity to focus on nurturing everyone. Striving for “normalcy” is no longer important when we are living a fulfilling and nurturing family life and our day-to-day routines are functioning well.
What is your best advice for finding a sense of “normalcy” when caring for a child with special needs?
Wendy is a mother of three children. Her son, Liam, has MECP2 Duplication Syndrome, a condition characterized by severe cognitive and physical disabilities with a predisposition to immune, respiratory and gastrointestinal problems. As the mother of a child with significant special needs, Wendy works to connect with other parents to learn how to best advocate for her son and provide support.