DON’T FORGET THE SIBLINGS! Kid Interviews About Autism

To read this blog, you might think that Jack is the center of my universe and that autism rules the day. Well, the truth is that Jack is only one of my 5 kids. And he is child #4. Today I’d like to introduce you to Jack’s siblings. They are an enormous part of his world. And he is a big part of theirs.

My crew! Mother’s Day 2015

Being a sibling of a special needs child adds unavoidable stresses or tension to that child’s life. As a parent, I feel a strong urge to not get too caught up in Jack. I am very aware that I need to forget Jack at times and pay attention and show love to each child. Some days are easier than others.

I read a cute book called Autism, The Invisible Cord: A Sibling’s Diary. It is a story of an older sister with a brother on the spectrum. She explains that it’s a “confusing cycle of love and anger, struggling to make them co-exist”. There’s a feeling of “occasional guilt, resentment, or sense of obligation towards your sibling.” I think this might just sum up the feelings that special needs children can bring to a family.

I decided that I wanted to get my kids’ voices involved in a post about them. And so, I conducted an interview with each of the 3 siblings older than Jack. I must first introduce them so you can get a taste of who they are to better appreciate their answers.

Jake & Jack. Teaching little brother a simple song.

Jacob (13): Our brand new teenager! He loves all things sports. He is very tender and patient with Jack. They share a room. Now our Jacob goes by Jake, so we have a Jake and a Jack. We as parents should have thought that one through a little more, but it is kinda fun for them.

In Jacob’s interview, he said “Sometimes we think he should change, but maybe we should.” He talked about how Jack takes a lot of patience, but that’s a good thing to learn. We need to understand autism so we know how to help our brother. Autism in our family is just how it is—it’s just another thing to think about and be aware of. Jack gives us a challenge, but we learn from it. I asked him, “If we could do a treatment to completely ‘cure’ Jack, should we do it?” Get ready for a tear-jerker: “No. He’s here for a reason. We love him the way he is. Don’t spend money on something that doesn’t need to be fixed. He’s great the way he is; he’s my brother.”

We discussed the negative aspects. He really wishes Jack would play and watch sports with him. And that he would spend less time on screens. Jacob wants to have a relationship with him, but doesn’t know how. It’s hard to connect and interact. “He goes to Mom and Dad. He doesn’t realize he could seek guidance from his siblings. I wish he would come to me.”

Nurse Allison helps Jack with a band-aid at camp.

Allison (10): The bookworm. She is a deep thinker with a huge vocabulary, which you’ll see in her answers. She is a little therapist for Jack. She seriously has skills and naturally works with him on behavioral, occupational and speech therapy in their day-to-day interactions.

Allison said she likes learning about autism, and she wouldn’t have learned without Jack. She explained autism, “you’re still normal, but you don’t see what we do, can’t think like we think, and you have to work really hard.” She dislikes his ‘rage monster’, which involves yelling, shaking, hitting and/or throwing. And he doesn’t listen when he’s angry or fixated on something.

Speaking of autism in our family, Allison said, “It’s not a big deal, he’s still my little brother. He’s different, but everyone is different. He’s different in a special way. We have to bend to him, but it’s like any other little kid. We have to be a little more compassionate. If not, we will get in trouble because Mom’s extra sensitive about Jack.” 

Allison appreciates that the “innocence of autism” keeps Jack protected from negative aspects of peers, teachers, and autism itself. When I asked about ‘curing’ him, she said, “It is endearing and awesome that he is autistic. I wouldn’t know my little brother [if he were cured.]”

She feels they have a good relationship. “You can tell he loves you, you just feel it. He knows me. I love it when he says, ‘I missed you Allison.’ He requests me to read with him. We have a relationship of chitter-chatter idle talk, but that is his communication.” Aww, gotta love Allison’s deep interpretation of things. She has been affected by Jack by being kinder and compassionate to others’ feelings. She feels more protective of him and others with special needs-and those people who just need friends.

Gideon & Jack swinging inside our dome structure.

Gideon (8): Sweet, silly, sensitive. Jack’s wrestling partner (wrangles which are sometimes playful and sometimes filled with raw emotions on both sides). They are cohorts in all things with a screen. Gideon is the most “real” with Jack—he won’t let him get away with much because everything in life should be fair (according to him).

Gideon doesn’t like that Jack bosses us around to do things exactly the way he has them in his head. He won’t settle down until it’s perfect.

Oh these two!

I asked him what autism means, “it means you have to go to a different school.” Suddenly I realized that we really never had discussed what this ‘autism’ thing meant, even though we say that word frequently. He said it makes our family louder and crazier. He wishes Jack wouldn’t put his hands in his pants (I hate this habit too!!), wouldn’t flap his arms, and that Jack went to school with him.

When asked about his relationship with Jack, Gideon said that their “fighting is sometimes fun and sometimes he gets very mad when it wasn’t me. I like to read to him and be silly, to make him laugh.”

>> After doing this interview exercise with my kids, I would say—try out an interview session with your kids! Whether it be about special needs, school, siblings, or whatnot, it can be very enlightening. I was so glad for this excuse to discuss how our family works and to get some deep thoughts and feelings out. <<

I do have one more child–3 year old Claire–but I gave her her own post. I have a lot of thoughts and tender feelings on their budding relationship.

A few reflections from this interview: I can see that my children DO feel the effects of our choices of services for Jack. Namely, sending him to a different school and going off to occupational therapy (discussed here, here and here) are an inconvenience and distraction to their mom. Also, each of them mentioned the joy of reading to Jack, something I had never thought about. I think reading provides a moment of connection, where they can forget their differences and concentrate on the characters of the book together. >> Therefore, I would highly recommend sending your kids off to share a book, no matter their ages. There is magic in reading. <<

The best part of all 3 interviews was feeling the real love that they have for Jack. They think he’s darling and funny and smart. They recognize his progress. There was a sentiment of “he’s my brother, I wouldn’t have him any other way” from each of them. I am so blessed to have ALL of these wonderful kids. Who knows, maybe having autism in the family is a helpful, life-molding blessing in disguise. We’ll take it.