Disability or Delight-Conclusion Post

Having a sibling with a disability comes with challenges. Depending on how various challenges are navigated within a family, a myriad of difficulties can occur.

In our family, we have learned so much by trial and error. In the beginning, we refrained from attending certain events, participating in various activities, and steered clear of particular places. It didn’t take long for us to realize that our neurotypical kiddos would be missing out on a lot if this is how we chose to proceed.

We learned to have one parent stay home if needed with Buggy (and later he and the Princess), and the other parent take big sister and big brother to whatever event or activity that was taking place. It was hard to be separated, but I am so grateful we did. Many families, to whom I have spoken, have seen resentment build in the neurotypical siblings and I am thankful that we were able to prevent this from occurring by shifting gears.

Some challenges we have faced in our neurotypical kiddos regarding their siblings with special needs…

• Feeling an extra sense of responsibility that their peers do not experience. For instance, when they are in a group setting where their sibling is present, they have difficulty relaxing and just being a kid.
• Their siblings with special needs do not understand what is and is not socially appropriate in many contexts and conversations which can cause embarrassment and isolation
• Their siblings require a different level of attention which can cause them to feel left out
• Discipline looks different for their siblings with special needs and can cause confusion for them due to varying expectations
• It takes a lot more self control to handle challenging behaviors
• Their siblings with special needs do not understand their need for personal space and alone time
• Feeling like they have to communicate what their sibling with special needs can or cannot do in various situations when the expectations on their sibling are unreasonable
• Helping their sibling to follow rules and expectations in social situations and make sure they don’t attempt something they cannot or should not do
• Belongings being damaged because their sibling with special needs did not know how to appropriately play with or use it

These challenges have been arduous, but I have seen so clearly how the Lord has used these to refine them and make them more like Jesus.

The “Big Kids” as we affectionately call them have grown in their love toward others as they have learned to live selflessly and put the needs of their siblings above their own. Here are some other ways I have seen them refined from their siblings…

• They have learned to calmly handle situations with self-control as they seek to maintain tranquility in a situation that could easily become explosive
• They have created books, games, and songs to help teach concepts to their siblings regarding social situations
• They have learned to express themselves and share how they are feeling with us as parents because we understand what they are going through
• Regarding discipline, they have learned that fair doesn’t mean equal, but what is right for that person and situation.
• My big kids have learned to tell siblings that rest is needed. So many people struggle with voicing their needs. Instead, they bottle up their emotions and eventually blow up under all of the pressure. Having stresses early on in life have helped them to learn how to healthily balance the need for quiet time and the need to think of others needs as well, not just their own.
• Having siblings with special needs has enabled them to clearly see those who are marginalized and left out. Due to this, they have met some wonderful people and made people feel welcome that would normally be ostracized.
• Dealing with items being damaged has helped them to learn to refrain from letting someone borrow something that they would be upset if it was not returned in the condition in which they lent it. More importantly, they realize that people are more important than things.
• Being in awkward social situations in which the sibling has said or done something embarrassing has helped them to be quick to forgive and have a sense of humor.

All of these have been gifts that disability has given to my “Big Kids.” However, the biggest gift living with two siblings with special needs has given them is COMPASSION.

What is compassion? According to Merriam-Webster, compassion is a “sympathetic consciousness of others’ distress together with a desire to alleviate it.” By God’s grace, He has used all of these challenges to grow them closer to Him and to one another. He has softened them, given them servants hearts, and taught them to serve the “least of these.” He has given them a spiritual, emotional, and relational maturity that they would not likely possess without walking this unique road. He has given them compassion for not only those with special needs, but with anyone who feels misunderstood, marginalized, or is struggling.

There have been many tears traversing this unique path that God has given us. We all have made many mistakes in how we have handled challenges that have come our way. However, none of us would change it. These two blessings with special needs have given us a unique family bond and a strong faith in our good God who works out all things for our good and His glory.

On the difficult days when we are surrounded by melt-downs, messes, and muddle, the Master is there to meet us in the middle of it and make all things new.