“Until you have a child with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.” – Anonymous
I love that quote. And it’s true. I speak from the standpoint primarily as a mother of a child with auditory/visual processing challenges (Sensory Processing Disorder) and also from my role of therapist, having counseled many special needs parents in my practice. That being said, the journey is long, hard, and uncertain. There are many twists and turns along the way. Some days feel like things are coming together, and you can finally surface for air. Other days are complete misery.
Children with special needs battle so many unseen challenges during any school day. It may be the bully on the school yard who targets your child’s vulnerabilities. Or it may be, unfortunately, an educator or administrator who is ignorant and needs sensitivity training for diverse learning styles. Perhaps your child has been unfairly subjected to shame and blame for misunderstanding a direction because of her disability and made to feel badly about themselves. It could be an IEP gone wrong, hearing diagnoses that are off-base or flat out incorrect. Or the person in Target who glares at you for not “controlling” your child when they spin out due to sensory overload.
I mention all the above not to be a downer, but to share real life anecdotes. Being a special needs parent (or the sibling of a special needs child) is rough. And it’s not for the faint of heart. It’s grinding work, day in and day out. And for those with children who also happen to be medically fragile or have sleep disturbances, disrupted sleep is common and contributes to poor mood health for parents (and kids!)
So, what can you do as the advocate/caregiver/nurturer/parent/guardian of your special needs child? Self care and self compassion is vital! So I have compiled a checklist of basic strategies that have certainly helped me, as well as other special needs parents I’ve had the privilege of working with:
- “Parents of children with special needs tend to be faced with a continuous barrage of challenges from societal isolation, financial strain, difficulty finding resources to outright exhaustion or feelings of confusion or burn out” (Special Learning, 2019). With that comes the potential to carry higher levels of stress, depression and anxiety than the general population. Therefore, it is paramount that special needs parents/siblings seek out psychotherapy if needed to address any clinical concerns that may be interfering with functioning day to day and to reclaim some sense of validation, encouragement and hope for a better tomorrow.
- Support groups and community resources are vital. As with the above suggestion for psychotherapy, groups help reduce isolation and bring parents in contact with like others who may be on similar journeys. As well, a compassionate group with provide tips, suggestions and potential resources that might lighten the load of the special needs family. Often times, groups become a second family.
- Your need for self care and self compassion is even that much more important than the general population (not to belittle or minimize someone else’s struggle). But seriously: you need good sleep hygiene, good nutrition, exercise and affirming social supports to stay out of depression/anxiety/trauma. See also my recent article on self-care and self-compassion and see if you can incorporate any of those suggestions or add to the list.
- Be ok with saying NO….to any extraneous obligations outside of basics. You may be schlepping your kiddo to speech or occupational therapy after school, or additional services. You will be tired. Exhausted, at times. Sometimes you will have to bow out of commitments because you are tapped out. That is OK. You must fill your cup before you can do anything further. Seek out only reciprocal, mutually nourishing friendships.
- Delegate. If you have the resources, have someone clean your house, order groceries delivered, enlist the help of a mother’s helper to do basic chores or tutoring for your neurotypical child, advocate for services that allow you respite. Do not give up. The squeaky wheel gets the grease.
So that’s a beginning for you. I think I will do a part 2 coming up. Here’s to balance and wellness, mamas and daddies out there….you are doing amazing work raising your special needs child.
“Sometimes real superheroes live in the hearts of small children fighting big battles.” Anonymous
Retrieved from January 14, 2019: https://www.special-learning.com/article/depression