I have been blessed with five beautiful children and for that I am eternally grateful. Sometimes I sit back and wonder how to answer the questions my older children have about their eldest brother. Everyone knows Christian has autism and epilepsy. He has been having intractable seizures since the age of 3 and he is now 12. The same type of concerns I have regarding Christian, like his health and future, his siblings are now having.
I feel a little lost at times because the questions will only get more difficult to answer and I am struggling even now. I attempt to give time to every child, but I know they see mommy take Christian to therapy 3 times a week… they see me giving him medications twice a day… see me assist him while taking a shower, or during a meltdown in the isle of Kroger. They see everything and boy, are they amazing. They go above and beyond trying to make Christian comfortable even when he is resistant. But then there are moments I realize they are hurting too…
Last Friday night I walked into Caleb’s’ room and asked him how he’s doing…
Me: “Caleb, look at me. How are you feeling?”
Him: “I’m okay mommy, just thinking,” he answered reading his book.
Me: “Well, what are you thinking about, baby?”
He turned away from his book and our eyes locked. His eyes were watery and his lips quivered.
Me: “Please, talk to me baby? What is the matter?”
And then it began… seemingly out of the blue, but not really.
Him: “Mommy, I’m scared… I get scared for Christian. I just don’t know what to do.”
Me: “Well, what scares you? What do you mean?”
Him: “When he has seizures I get scared. I want them to stop… I wish they would stop.”
Me: “I understand. I want that too. Mommy and the doctors are trying really hard to make Christian better. It isn’t always easy.”
Him: “I think maybe if he did not have any seizures he would like me more. He never wants me to help him or touch him. I am just trying to help.”
Me: “I know baby, I know. How does that make you feel?”
Him: “Lonely. I wish I had a brother that would play with me sometimes. I love him. It is just sometimes hard mommy not to be mad at him. I know you say he is trying and he can’t help it. It just still hurts.”
In this moment I wanted to literally break or simply slide into my carpet. My entire soul felt like it was being stretched to some unfathomable length. Our special siblings work tirelessly to please their siblings and their parents/caregivers and are sometimes accidently overlooked. I know my feelings about Christian from a mother’s perspective are strong, but hearing from the mouth of my 10 year old son humbled me.
I always teach my children that their feelings are important and valid. Their feelings don’t have to be validated by anyone or anything. They are to be owned, accepted and understood. Now, your actions have consequences. Regardless, of any feelings you may have you are always responsible for your actions. Now, my personal thoughts are that many adults have difficulties because we have grown weary trying to mask our feelings.
So I sit here writing thinking about last Friday night. I am feeling weak and uncertain in this moment.
Like Jeniece, how do you explain to your second oldest child that his big brother may not ever want a hug from him?
What do you say as you wipe the tears from his face while he asks, “What can I do to help Christian get better, Mommy?”
What is the best response for the question, “why doesn’t he like me anymore?”
I love him, but I don’t understand him and that scares me.
How do I answer these questions and more… when I have similar unanswered questions?
Caleb, can see his friends developing relationships with their siblings. The laughing, joking, playing around he witnesses around him, but can’t experience at home. He is having a difficult time adjusting to being the second eldest, but having first child responsibility. He is unable to have those laid back conversations with Christian without it turning into a battle. He is increasingly becoming aware that although Christian is in 7th grade we are still working on buttoning a shirt. We are still practicing washing our hands, back and front, while singing the alphabet song. Caleb is aware that Christian’s echolia bothers other children who do not understand that he is simply trying to be more like them. I see it in his eyes, but as a mother how can I help him.
This mother is researching. This mother is writing. This mother is trying, failing, and trying again. The relationship between a differently-abled child and their sibling is unique. It is something I have trouble wrapping my head around at times because I am still learning everyday how to be a successful special needs parent.
How do you work with your children? Have you ever encountered a similar situation? If you are a sibling, can you relate to Caleb’s experience? Please, let me know because I would love to hear from you!
Love you all!