Families with a child affected by a mental/neurological disorder often live a chaotic and stress filled existence. Often, the struggle is invisible to the public. Unknown to even neighbors, a series of chronic storms erupt inside the home. Furthermore, stigmas make seeking support challenging. Parents struggle to give time to all of their children as well as their marriage Siblings may resent the extra attention to the affected child. It is all too easy for fracture to take place and the results to each member can have short and long term consequences.
You want to help but how do you do it? Here is a list of suggestions that can get you started.
Food: It connects us. But good news-you don’t have to be a gourmet chef to share it. How about ordering a pizza? One of the best dinners shared with us was ham and cheese sliders that we could warm up and grab quickly on our way to the hospital. Truthfully, anything that offers a quick bit of nutrition and satisfies, feeds the stomach and the soul. Always make sure you are aware of any food restrictions (especially true if the child has a sensory issue.)
Gift cards. Medical bills quickly consume a budget. Sure, there are payment plans but when you have at least a few going, there is not much left for any extras. In addition, schedules can become packed with doctors appointments and unexpected health related crises. Furthermore, siblings often feel left behind as time and money are consumed quickly. Special family outings often disappear. Gift cards for a movie theater, McDonalds, and other “extras” are an appreciated treat. Gas cards are also beneficial.
Offer to take siblings for a few hours. Respite is necessary for all family members. Routines often become interrupted, noise levels escalate, conflict can be frequent. These factors contribute to a stressful environments. Can you offer your home as a quiet place of refuge? Renting a movie, supplying snacks, sharing skills, or even letting kids play on their electronic devices or read in a peaceful place is a gift. If you are more adventurous, try a park, ice skating or the beach.
Care for the affected child: This suggestion requires a familiarity with the child and their needs. Sometimes a new environment can be helpful. Other times, it may create further anxiety. If you can provide this option, it sends an affirming message to the child that they are capable of being loved on by those outside their family. To the parents, it sends an empathetic message.
Put together a gift basket: Parents naturally tend to invest their time, energy, and resources toward the health of their child. As a result, they are left “empty.” This affects their own emotional and physical well-being. It also leads to strained marriages. How about a gift basket filled with bubble bath, hand lotion, special treats, rental movie gift card, coffee shop gift card, teas, bottle of wine? Put on your creative hat and see what happens!
Share resources. Let’s face it, receiving money from others can be awkward. Yet, it may be the very thing that would help alleviate stress. Could you ask to pay a bill? Could you pay for a sitter? There are creative ways to share financially while not taking away dignity or creating an uncomfortable situation.
When a child fights a physical illness, it often leads to a rally of support. The visible symptoms communicate the urgency of support to others. Unfortunately, mental illness, addiction, neurological disorders do not always present in a way that draws attention. The family struggles silently. When we are aware of others’ needs, we become better advocates and neighbors. And we are transformed in the process.
It happens every year around July 5th…..As we walk into a store, the former 4th of July/Seasonal section transforms in the blink of an eye to shelves filled with notebooks, markers, crayons. Fall beckons even though the temperature bathes us in swelting heat. And the dread begins. School will begin soon.
For some parents, the reminder of the school season brings relief. Structure helps us all. For kids, boredom has set in and the opportunity for new friendships, learning environments and knowledge provides comfort. The issues of safety, school provided meals and childcare make the school year welcoming. Furthermore, I think we can all attest that, by August 1, the sibling fighting season is coming to a “point of no return.” The lure of soon-to-be peaceful hours on the homefront presents itself. I laughed when I saw that Trader Joes hosted a “back to school” tasting party for the parents on the first day of school. I’d love to say that I felt such a sense of exhilaration but I didn’t.
For me, the sight of school supplies on July 5th, brought very mixed emotions. My daughter struggled in school. While kids excitedly found out the names of their teachers we felt a lump in our throats. Would he/she see the beauty in my child that I see? While other kids frantically called up their friends to see who else shared their teacher assignment, the school suggested placing a familiar student in her class so that she would perhaps engage socially.
For us, it meant hoping that her teacher(s) would cooperate with the IEP easily so that I didn’t have to spend time at night emailing them about assignments. My other kids tired of being pushed aside in order to help my daughter complete her homework. We’re talking long tension filled hours which resulted in exhaustion for my daughter as well as my husband and me. Those days seemed to resemble a scene from the movie, “Groundhog Day.” I actually loathed going to sleep as I knew that the events of the day would all play out again the next day.
Getting my daughter to school proved to have its own challenges.
How do you manage to get a child to school on time when the clutches of anxiety/depression attempt to pull your child away from your hands ?
How do you move on with your day after dropping your child off at school after an hour long battle? Her eyes, swollen and puffy, her demeanor signifying defeat?
Don’t get me wrong. Summer is not always a picnic either when you have a child with behavioral/mood disorders. The lack of structure, the full on presence of everyone at home, everyday, and the lack of respite for the parents (and siblings) from the unpredictable outbursts make Summer days tedious at times. Yet, the beauty is that the child is in a familiar environment, and we can shape the schedule and activities around her needs.
These last few years, the approach of “back to school” season has not brought on the dread as much as in the past. A few years ago, we made the decision to home school our daughter. It was the best decision for our family. This choice presents its own set of challenges but we have developed a routine that works for us. I realize that homeschooling may not be the best solution for everyone.
So for those of you who are familiar with the dread of which I speak, keep on keeping on. God knows how much you love your child and that you want the best for them. What can you do?
Ask for help. You are not a bad parent because you cannot manage this school thing alone. Utilize your school village: social workers, resource teachers, aids to help your child navigate the learning environment. Furthermore, know your child’s legal rights for education. If necessary, seek advocacy outside of the district. There are some lawyers who offer services pro bono (search for local resources).
Let your vulnerability speak of your journey. I remember one phone call with my daughter’s resource teacher in which the tears came so quickly and so fiercely, that I could barely speak. Sometimes, others really do not understand the depth of the frustration and pain you feel for your child.
Most of all, know that God has created your child for a purpose. A sacred purpose. No one can take that away.
What can you do If you are reading this post and do not face the dread posed by “Back to School” season? Consider the little things that can make an impact on our families in a big way. Providing meals (even a gift card), extra affirmation to the siblings and generally listening without judgement speaks love into their souls. Pray for them.
These days can be hard. Sometimes, the words to form our prayers are just not there. But remember this: “Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. “(Romans 8:26, Msg.)