Accepting help and letting go are hard pills for parents of kids with special needs to swallow. As her daughter nears her 20th birthday, guest blogger Karen Jackson reflects upon what she’s learned about accepting help and letting go. Her struggle is a universal one, so expect to see yourself in what Karen has to say.
Accepting Help and Letting Go
Accepting help. It has never been my strong suit. I am pretty sure that I know the best way to care for my daughter and what works well for her. Yet, it is not only a blessing to have caregiving help for Samantha. It is also good for her to have others in her life to push her towards independence and provide new ideas and experiences.
Parents of children with special needs are fiercely strong advocates, used to doing whatever it takes for kids. We are often hyper-vigilant, and we function on less sleep that most. We balance family, work, therapy, numerous medical appointments, and medications. We have been doing this for years and years and years!
So when someone offers to help in any form–whether it be a short respite, or long term in home care–we are simultaneously ecstatic and cautious. How could anyone know our children or care for them like we do? How do we step away to get a short break or more permanent support?
Six years ago, we received notification that we would soon be getting waiver services from the state. I stood in the shower, contemplating what it would mean to our family to have consistent help in our home. I cried, relieved that after 13 years of caring for a child with severe disability, the state finally recognized we needed help.
Waiver services changed my life. But along with that help, so needed and much appreciated, came the realization that I would need to give up some control, let go of constant vigilance, and accept the support of others. It was not, then or now, an easy process.
Even now, I make mistakes and can be overly protective. Sometimes, I forget that Samantha’s current in-home caregiver is very capable. Or that Samantha is almost 20 years old and needs time with friends, experiences that do not include her mother.
Letting go. All parents, regardless of a child’s abilities, need to let go as their children move towards independence. For the parent of a child with special needs, especially of kids who are non-verbal or need specialized care, this challenge is particularly difficult. Both parents and caregivers need to demonstrate patience.
Recently, a professional caregiver mentioned a parent who was resistant to letting her child go on outings, be alone with the caregiver, or let the child out of her sight. Consequently, the child would not respond to the new caregiver in any way, always deferring to the parent. The caregiver wanted to know, “What do I do?”.
My advice to the caregiver was to start small. To begin by taking short, specific outings with an end time in mind. To communicate about details and understand that the parent had to know these details for many years. To take photos of your outing, if possible and send them by phone, reassuring the parent that all is well.
My advice for parents is to start small, also. To spend some time outside the home without your child. To take a walk. To get coffee with a friend. To give the caregiver time to bond and learn about how to best care for your child.
This summer, my husband and I will be married 25 years-a significant anniversary, especially considering the challenges we have faced. We are planning a trip in the fall to go away for a full week to celebrate. This will be the first time I have been away from Samantha for more than a few days. I am nervous but also realize that we have the supports in place to make it happen. Samantha is old enough to handle having me away for a week, whether or not I am ready.
Building up to a long trip away has taken me a very long time. A short time ago, I was the parent who was afraid to let her daughter out of her sight for a minute, sure I was the only person who knew what was best for her.
Accepting help and letting go. It is a tough lesson for many parents of children with special needs. So be patient and show grace. Give others the chance to be a blessing to you and your child, trusting that in the end God is looking out for us all.
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