It’s natural for parents to place their children’s needs before their own. It’s the reason why flight attendants have to remind passengers to secure their own oxygen masks before their children’s in the event the cabin loses pressure. The oxygen mask is a lesson for life: you can’t effectively nurture others until you are in a healthy condition to do so.
Parenting a child with special needs or chronic illness is a long-term responsibility that should be treated like a marathon, not a sprint. Those who don’t pace themselves and accept outside support are at risk of caregiver burnout. Symptoms of caregiver burnout can include excessive fatigue, stress, anxiety and depression.
Here are some ways to create a healthy balance and alleviate the pressure that comes with the territory.
Many people find comfort in locating support groups of families dealing with similar diagnoses and lifestyles. It can be helpful for parents to share ideas, success stories, and – let’s face it – frustrations with those who understand what it’s like to raise a special child. Children can also thrive by building friendships with other kids just like themselves.
If you’re unable to find families like yours in your local community, search Facebook and other online forums for virtual support groups where parents encourage and connect with one another. Long-distance friendships among parents in these groups can be very enriching and inspiring.
Allow yourself to have hobbies and interests without feeling guilty about it. Do you love music? Reading? Exercise? Carve out a reasonable amount of time every week for your personal interests. If you make the effort to recharge your battery on a regular basis, you will have more energy for your family.
Many states offer a certain number of in-home habilitation hours to help children with special needs reach their full potential. Services offered will vary based on a child’s condition, and may include speech therapy to improve oral-motor skills, physical therapy to increase strength and mobility, and occupational therapy, which can address feeding disorders and sensory issues, among others. If your child has acute medical care requirements, their health insurance policy may cover in-home nursing visits.
Staying home for these visits, versus driving to appointments, can make a hectic schedule feel much more manageable for families. MGA Home Healthcare can help you determine which in-home therapy and nursing services would be the right fit for your child’s developmental and medical needs.
Time to yourself – or alone with your partner – is essential to staying healthy in a demanding situation. Your state may provide you with a number of respite hours, which is temporary care by a qualified adult to give caregivers a break from the stress of looking after a vulnerable family member.
It may take some trial and error to find a respite provider you trust completely with your child (or children). But one really great thing about respite providers is that they can be a friend or family member. So, if grandparents want to get certified at a government-approved agency to become respite workers, they can get paid an hourly rate by the state to watch their own grandchildren.
While overnight respite care is also available, it’s more difficult to find. This might be the perfect motivation to recruit a family member to get qualified for respite care so you can have the occasional weekend away with your spouse.
Public School Programs
Once your child turns three years old, they may qualify for state-funded early intervention preschool through your public school district, complete with a bus ride to and from your doorstep. Summer and after-school programs specific to your child’s condition may also be available, to maximize learning opportunities with qualified teachers.
Prioritize Family Time
While all of these resources are huge blessings for families who need them, it’s important to strike the right balance. If you say “yes” to every service that is offered to your child, your home could start to feel like a revolving door for therapists.
Ask yourself if you’re getting enough quality time with your child. Do they have plenty of freedom to play and bond with siblings, or are they so immersed in habilitation that they are missing out on family time?
Make a concerted effort to set a pace for your family that is sustainable for the long term, even if it requires you to correct course by declining certain services for a season. Remember that all of the therapies in the world cannot replace the peace that comes from a happy, well-rounded family.
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