Accepting Help and Letting Go: The Dilemma of a Special Needs Parent

Accepting help and letting go can be hard for parents of kids with special needs. Guest blogger Karen Jackson is reflects on how she's learning to do it.

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

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

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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Accepting help and letting go can be hard for parents of kids with special needs. Guest blogger Karen Jackson is reflects on how she's learning to do it.

3 Comments

  1. July 9, 2017    

    I struggle so much with accepting help. I think it’s exacerbated by having 5 children and feeling like I need to do it alone otherwise people will judge me on having more than the average number of children.

    My special needs girl doesn’t require loads of additional help right now but who knows what the future may bring.

    Beth

  2. July 9, 2017    

    What a wonderful post and right on. Letting go is so difficult. We want help but to let someone in who doesnt understand your childs needs is challenging. Also challenging when you know the person may have to put up with some undesirable behaviors. The best thing I ever did was start small and build. To look back and see the progress and move towards independence is amazing. To think had I never tried we would not be where we are today.

  3. July 11, 2017    

    Hi Beth, your struggle is real, and it’s shared by many other moms. We have to think of what’s best for our kids, however, humble ourselves, and ask. Jolene

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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