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7 Things Parents Raising Children With Disabilities Wish You Knew

By February 26, 2024No Comments5 min read

7  things parents raising children with disabilities wish you knew.

Parenting is an incredible journey, filled with joy, challenges, and endless learning opportunities. But for parents raising children with disabilities, this journey often comes with unique obstacles and experiences that can be difficult for others to fully comprehend.

Through the eyes and experiences of parents navigating the complexities of raising children with disabilities, we gain invaluable insights into their world. These insights not only foster empathy but also serve as a guide for creating a more inclusive and understanding community.

Here are seven things they wish other parents raising children with disabilities knew;

  1. It’s normal to feel sad after receiving a diagnosis.

Denial is normal. Parents go through the grief period. They grieve the neurotypical child they expected to have.

The moment a parent learns of their child’s disability can be overwhelming, filled with uncertainty about the future. They are filled with a sense of mourning for the dreams they may have had. It’s a pivotal moment that marks the beginning of a new journey, one that may not have been anticipated or planned for.

Parents wish for others to understand that feeling sad doesn’t equate to a lack of love or acceptance for their child. Instead, it’s a natural response to the upheaval of expectations and the adjustment to a different reality. It’s a process of coming to terms with the unknown and finding the strength to move forward.

It’s okay not to see how your child’s life will turn out.  Getting a diagnosis is never an easy job. Most parents feel like they got saddled with a burden they were unprepared for. It’s okay to be angry, overwhelmed, sad, and confused.

  1. Have a strong support System.

Aska’s journey as a parent to a child living with autism has been marked by challenges, but also by the profound impact of having a strong support system by her side.

 Aska talks to her family about the changes she’s noticed in her son. This way her family assures her she is on the right track. Joining a group such as Through The Roof, Down Syndrome Society of Kenya you’ll get emotional support and tips on what to do. The journey is easier with friends.

  1. You will second-guess yourself a lot.

Raising a child with disabilities often means navigating unfamiliar territories, where the road ahead is fraught with uncertainties and challenges.

One of the most profound experiences for parents in this journey is the constant second-guessing of their decisions and actions. From choosing the right therapies and interventions to making everyday parenting choices, doubt can become a constant companion.

Documenting every milestones and symptoms you see in your child will make everything eaiser. The visits to the doctor will become friendly as you will not feel like you are trying to sell a story about your child to them.

Aska documented everything she saw in her child. Making it easier to look back and see the progress.

As a parent, it is important to learn to trust your instincts and rely on your resilience. Find solace in the knowledge that you are doing the best you can with the resources and information available to you. Through this journey of self-discovery and growth, parents of children with disabilities develop a profound sense of resilience and determination, knowing that they are not alone in their struggles and that every decision is made with love and the best intentions for their child’s future.

  1. Keep educating yourself.

Having the right information is the first step to inclusion.

It is also a great way to equip yourself with the necessary knowledge to help your children navigate life. Here’s a link to a Unicef Master class for parents raising children with disabilities that you can check out.

  1. Understand that it’s okay to be exhausted.

Raising a child with disabilities is not an easy task. It’s important that you don’t lose perspective; don’t confuse who your child is and what you feel for them with the work that is required to raise them. Your lives should not revolve around their disabilities only. In these times it’s okay to take a break and rest.

Read our article on Care for the Giver we highlighted 10 signs you are exhausted.

  1. Understand that your child does understand you.

They may not talk back at you or confront you but they understand you.  In our last fellowship, one of the parents shared her elopement story. She mentioned that she resolved this by holding her son and explaining to him that he meant a lot to her and she would be devasted if anything happened to him. The son has never eloped again. How much you love them. Call them and use your voice. Don’t place any limitations on your child, they are more than just their diagnoses.

  1. As you will be the sole caregiver for your child, you might miss out on a lot.

In case of emergency Parents raising children with disabilities may cancel plans now and then. Be patient with yourself, and understand that you are not ignoring your family and friends.

The journey of parenting a child with disabilities is one that is filled with unique challenges, triumphs, and profound moments of growth. From the initial shock of receiving a diagnosis to the ongoing challenges of daily life, these parents wish for understanding, empathy, and support from others walking a similar journey.

They wish for the acknowledgment that feeling sadness upon receiving a diagnosis is normal, and that it’s okay to mourn the dreams they had while embracing the new ones that emerge. They stress the importance of having a strong support system, whether it’s through family, friends, or support groups, as these connections provide invaluable comfort and solidarity.



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