Note: While most of our posts on this theme are firsthand accounts from members of the disabilities community, this post is parent-to-parent.
I knelt in church one Sunday morning bringing to God all that was in my heart. That week I received a diagnosis from a psychiatrist that our young foster son was intellectually disabled. We knew when he came to live with us that he had behavior challenges, but we thought this was explained by the chaotic environment he had been living in. Now we knew that, in addition to the behavior issues, he had a disability. While his behavior may improve, certain delays and behaviors would continue—not everything would be improving or “gotten over” with behavior modification and time. A disability is permanent. He would always lack certain abilities. Always.
Yet here is something equally true: while being a caregiver, I would be changed profoundly as well. It was a long and difficult journey, but I eventually realized that for every challenge I faced, God increased my capacity to handle whatever came. The situation does not have to change–your child does not have to change–rather, your own capacity for love, flexibility, problem-solving, endurance, and your capacity to hold pain all grow. Being born with an eternal soul, in the image of God, means we can grow to bear all things. The growing process is difficult and painful, but eventually you realize that you have gained so much that you peer into your own heart and find God.
Parenting a child with a disability can be isolating. Whatever makes your child different makes your experience of parenting different too. Your friends may not be able to relate to your specific circumstances or challenges. If you are a parent of a disabled child, you are in for a roller coaster ride that will take you back and forth through many stages and emotions. But you are not alone. Here are some things I have found helpful as I parented four children with intellectual and mental disabilities, and how these practices have impacted my faith.
Allow yourself time to grieve your losses
Take some time to recognize your losses and feel the grief. Other friends and their children will experience activities or milestones that you may never get to experience—or not experience in the same way depending on the disability—physical, mental, emotional, or intellectual. Some mothers will never get a chance to be the “soccer mom.” Other parents will never help their child in a college search. Many fathers will never know that nervous and proud moment when your child drives for the first time.
When you knew you were becoming a parent, you started dreaming of what this new life might be like. Now you realize some of your dreams won’t materialize. Take time to acknowledge the hurts. Mourn what is missing. Honoring your feelings will prevent them from becoming resentments. Honoring the losses allows you (and your child) to move past the vision of what could have been and recognize the beauty of what is. Also, be willing to come back and attend this grief over and over with each new realization of loss. This is not a linear path, and you will never be “done” with the grief, but you can increase your capacity to love and see the good in what is.
Don’t get stuck in “Why?”
“Why did this happen to my child?” “What did we do to cause this?” Ultimately, these are questions that cannot be answered. This is really a subset of dealing with grief as discussed above. Sometimes, we try to find an intellectual way out of an emotional pain. It doesn’t work. There is no answer that will satisfy the “why” question. It’s painful. That’s the whole truth of it. I think of “why” as a rest stop. Sometimes rest stops are very needed, but it does no good to get stuck there. Eventually, we need to get back on the road of growing our capacity to deal with the reality of our situation.
We can try to demand answers from God, storm and be angry with God for creating our situation, but ultimately that will never satisfy. Eventually, what helps is to remember that God is God and we are human. God does not owe us explanations, but we can trust God and know that God is always loving. What is my loving Creator offering me in this situation? Where am I being invited to stretch? Can I trust that I have access to all that ever is, was, or will be? Certainly then, I can stretch to hold and love even this situation that I never would have wished for.
Pray to be able to see the tools and the love God is offering you even in your hardest moments. I remember once weeping out in pain and in prayer, “Not my child, Lord! Do anything to me, but do not make my child suffer! This I cannot endure!” Even hanging from the cross, Jesus was able to commend his spirit into his Father’s hands. Pray, and you may find that you can commend your spirit–and yes, even your child’s spirit!–into the hands of the Creator. And then watch and marvel what the Creator does with that sacrifice! What wonders are created by love!
Shift your focus
Every child of God has something delightful about them. It is not naive to focus on the person they are and the things they do to bring good into the world. One child I knew, who was disabled, laughed readily at simple things. His laughter was infectious, and anyone who bothered to take the time, felt lighter and more joyful for having been in his presence. He revealed happiness in the world! This is truly delightful and a blessing! My own foster son loves deeply and can identify with emotions. This helps him be with people in hard times. He can sit with someone and say, “that’s sad,” without trying to fix—a skill many non-disabled adults have difficulty with! Many disabled children have a capacity to see or be with others in a non-typical, truly beautiful way.
Whatever the disability, our children can still be happy—isn’t that really what all parents wish for their child? How many times do parents say, “as long as they’re happy!” Notice what brings happiness. Stop and savor moments of happiness. Pause for 15-20 seconds. Notice the good feelings in your body. Memorize the scene and the feeling. Remember this as a touchstone to return to repeatedly in your heart and mind.
Cope with your frustration
No matter the disability, even when you recognize the beauty in your child, you will find yourself frustrated at some point. Whether it’s repetitive behaviors or an inability to do something that seems like it ought to be easy, frustration is real. Raising a child with disabilities is frustrating. Period. It doesn’t make you some sort of monster to be frustrated with your child. It does not mean you don’t love your child enough. Rather than becoming even more frustrated at your own frustration, stop and take stock.
Realize that your child is bringing their best self—there is no better version of themselves that your child has hidden away that they are refusing to show you. Ask yourself: can I accept my child the way they are? This helps distance your child from their behavior. Now that you’ve accepted your child, you can determine what might need to happen to change, correct, modify, or endure the situation. Your emotional awareness will help your child to grow up loving the life they have, without the influence of your emotions weighing on them. As you accept and handle your emotions, you are modeling this behavior for your child. (After all, your child is likely to get frustrated at some point, too.)
While parenting a child with a disability can be isolating, there are informational groups and support groups to help. I once belonged to a group of parents of adopted and foster children. It was nice to be around parents who could relate to what I was going through and not judge. There are support groups for just about anything. Do an internet search or ask your child’s doctor or teacher for resources. Make sure the group is supportive in your growth. (I have heard of groups that got stuck in complaining without noticing the beauty. This may not be helpful to you.) It may also be helpful to read the writing of an adult with the same or similar disability as your child. This can give you understanding and hope.
As with any other challenging situation, we grow to accommodate. We become advocates for our beloved children. You will grow, your child will grow, your faith will grow, and you will realize that parenting is one of the best things you’ve ever done!
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