Last Updated on March 22, 2019
“How come everyone is all excited when she finishes her math book, but nobody cares when I finish mine?” My son, age 11, struggled to get the words out, tears brimming and voice trembling.
My heart hurt. Because he was right.
Not that nobody cared, but that we didn’t celebrate his accomplishments the same as hers. I hugged him hard, letting him cry. “I am so sorry. You are doing a fantastic job in school, and I am very proud of you. I’m sorry I don’t tell you that enough.”
Let me tell you a little secret about families with special needs kids. Many of them actually have other children, too. And very often those children get the short end of the deal. Mom (and Dad), of necessity, often have to give more time, energy, and attention to the needy child. And then by the time Mom gets to the other child, she is already exhausted.
When our twins were attending three types of therapy three days per week, every inch toward a developmental milestone was huge. They had to be taught everything. So the progress that other parents never even noticed in their children was, to us, an event to celebrate. Our boys didn’t just start walking one day around 12 months; they had to be taught over the course of 24- and 30-some months. And believe me, those first steps were cause for a party!
The flip side is that our other children, developing on a standard schedule, didn’t receive the same congratulations. After all, there was never a thought that they wouldn’t progress.
Recently I asked my 15-year-old daughter, our firstborn who, while exceptional, does not have the kind of special needs I’m talking about, “Do you think of our family as a special needs family?”
I thought she would say something about how it’s just normal for us, but she surprised me with a quick, “Yes!”
When I asked her to explain, she continued, “Well, I have to help them a lot. But sometimes I wonder how people see [Special Sibling]. Do they only see him as a kid with special needs, or do they understand that he uses words like miniscule?” (Special Sibling loves words.) So in the same sentence, she acknowledged both his differences and his normalness.
A number of years ago, I stood cribside during a frustrating night. In tears I prayed, “God, I have to believe that in the end this is best for all of us.” And I still believe it. While my other children don’t always realize the sacrifices they have made, I do, and I grieve over it at times.
However, I also see the incredible gift it is for my children to grow up in this family and have some unusual experiences with their siblings. I believe God uses this as a training ground for them and develops their character, compassion, patience, and love. But as with my son upset about his math success going unnoticed, I am reminded of how intentional I have to be to demonstrate my love and encouragement to them.
So next time you run into me at church, work, or the mall, maybe don’t ask about my special kids. Instead, ask about my other special kids!
Hello, moms! I am so happy to share with you some of my experiences and lessons learned as I have loved my six children. One of the best decisions my husband and I made early on was to set our budget on one income – his! – so that I could invest fulltime in the lives of any little ones God brought us, and bring them He did. Boys, girls, birth, adoption, curly hair, straight hair, near-sighted, far-sighted, American, Russian, high school, elementary, overachieving, and working to keep up. Busy? Yes, but everyone’s busy doing something, right? I choose momming! In my spare moments, I like reading, watching sports, and enjoying peace and quiet.
A good reminder that we need to honor the other children of the family with a special needs child. My youngest granddaughter is autistic and her almost 2 years older sister has learned much about compassion, patience, and love for her sister.
This is all too familiar to me. Eldest has occasionally bemoaned the autism that has our family gripped in a daily struggle. Nothing is normal here. But, then again, that is our normal. There are times when eldest feels overlooked and times when she feels overburdened. It’s the sad truth, but I have to cling to the fact that all families have challenges. If it weren’t this huge challenge, it would be something else. We try to care for eldest’s needs, but have to balance that with younger sister’s. It’s tough. Hang in there, moms!
I turn 60 this year. My 57-year-old brother has Fragile X Syndrome…a form of mental retardation with aspects of autism. Since my mother’s passing in 2008, I am his guardian and he lives in a house next door to me. Fairly high functioning, with the assistance of home-delivered meals and a home-help aide, he can maintain his own living space, although I oversee his medical care, services available to him and manage his finances and the mountains of paperwork generated by the Social Security Administration and State Social Services.
Although LB (family nickname for Little Brother) is younger than me, our surviving older siblings are eight and thirteen years older than me and therefore eleven and fifteen years older than LB. Our two deceased brothers were in the middle of that age range. Our Dad became disabled when I was eight and LB was five, and Mom had to work to support the family. Therefore by the time I was in first grade, much of LB’s care fell to me, and it felt that the only reason for my existence was to be his caretaker. Although I am reconciled to our relationship now (and love my brother dearly), when I was nine years old and could not play at the neighbor girl’s house because I had to take LB where ever I went and she (and her parents) did not want him in her home or when I had to get up extra early in order to make it to my school on time because I had to walk LB to his school (to protect him from bullies along the way) or at seventeen, when I had to leave a family gathering in the midst of a conversation with friends or cousins because LB was having a meltdown and I had to take my parents and him home…the resentment was intense. For the sibling of a special needs child, character, compassion, patience and love are not an automatic given.
Having Scripture “To whom much is given, much is expected,” and the example of Christ’s life quoted to me did not help. I was raised to love the Lord, but always, always taking second or third place and being denied the activities I wished to participate in (band, music lessons, camp, sleepovers at friends, etc.) because family funds were needed for LB’s therapy or special needs summer camp, or because I was needed to supervise him robbed me of much of my childhood and gave me a nagging distrust, although never disbelief, of God.
God, maturity, and a much needed decade of living in another city (although I still managed all the paperwork) gave me the perspective and patience to accept that LB and I will be together for as long as we both shall live. (No, I’m not married…and probably never will be)
But I would like to remind the parents of special needs children…they grow up to be special needs adults…and you will not be here forever. If you are expecting your “normal” children to care for their siblings after you are gone, it essential you be intentional in letting them know NOW how much you love and appreciate them.
Kathy, you have brought tears to my eyes because you have articulated SO well the challenges the siblings can face. It makes me that much more determined to give each and every child the time, love, and appreciation they need. Thank you for your admonishment and encouragement, and may you be blessed in unexpected ways for your love and devotion to your brother.