This week we are featuring the perspectives of siblings that have a brother or sister with autism. Below is our last interview in this series.
theautismblog: Your name and age:
Tammy, 25 years old.
theautismblog: Your brother’s name and age:
Mikey (sometimes we call him Mikey Doodle- per his request!), 17 years old.
theautismblog: What kind of things do you do for fun?
Well, this list could go on and on, but for sake of not boring your readers… I love to travel. To meet new people. To try new things. To learn about peoples lives and history. EATING… cooking, baking, and eating! Reading. Hiking, yoga, biking, boating, and camping. Music: concerts, a new cd, a new band. My job is very fun.
theautismblog: What kind of things does your brother do for fun?
Mikey loves to swim. He’s a complete fish! He likes to ride his big bike. He loves playing with his I pad. He loves to help dad at his shop, driving the forklift, cleaning, lifting- he’s a tough worker! Music- he loves music. His favorite songs play on repeat over and over! He only likes to eat mac and cheese, cereal, candy, ice cream and pizza, sometimes.
theautismblog: Do you guys spend much time together? What do you do?
My guy Mikey moved to California a few years ago, so we try to talk a lot on the phone. Mikey usually refers to me as his crazy ol’ sister and calls me some name like ‘stinker doodle, twerp, weirdo’ which are endearing ; )
I typically go visit him a few times a year, and he comes to Seattle sporadically, as well. When we do get together, we have way too much fun. Mike always manages to keep me on my toes, and keep me laughing through all of it! We love to go for long walks, drives in my car with the music on and windows down. We love getting ice cream, or In and Out Milkshakes (who doesn’t love that, when you’re in California!). We swim and hot tub for hours on end. We watch movies, and before bed I always scratch his back.
theautismblog: What have you taught your brother?
I like to think I’ve taught him to not care what someone thinks of you, and when someone has something negative to say, to brush if off. I’ve taught him to laugh when people get road rage, because really, it’s quite silly. I’ve taught him to be himself, and be proud of who he is.
theautismblog: What has your brother taught you?
I’ll never really be able to capture in words everything Mikey has taught me about life. More than anything, Mikey has taught me to appreciate everything we have. To be grateful and compassionate. To not judge and to treat everyone with a sincere respect and appreciation. Mikey has taught me to laugh, a lot, even when things might not seem funny. He’s reminded me that no one is perfect and that ‘normal’ really means nothing. Most of all though, Mikey has taught me complete, unconditional love.
theautismblog: What kinds of things are hard to do with your brother?
After many lessons learned, I’ve realized it’s pretty hard to take Mikey into public places where there are a lot of people. Or a lot of stimulation (which my a.d.h.d self can completely relate to!) Mikey is very interested in things, and talking to people, and ‘exploring’. Shopping trips never turn out too well, but it’s nothing a chocolate shake can’t help take care of ;).
theautismblog: Can you think of a time you felt really proud of your brother?
I’ve watched Mikey be the best uncle anyone could ask for. I’ve watched him hold my newborn nephew and niece with such a sincere caretaking aura, and such a real sense of love in his eyes. I was so proud to see that when he really needed to, he could control his typical behaviors and actions, because he knew for the safety and well-being of his niece and nephew, he needed to.
theautismblog: Does your brother ever embarrass or frustrate you? If yes, how do you handle it?
Mikey was diagnosed with autism when he was a little older than 4… at that time I was 12 and getting into my ‘pre-teen’ years. I remember times of being embarrassed by his loud noises, or him running off in stores or parking lots. But, now that I’m older I realize that embarrassment or frustration was rather just concern. For his safety. For his well-being. Nowadays, he only frustrates me when he hides my keys (he knows, that if I can’t find my keys then I can never leave him to come back to Seattle). But, beneath the frustration is a little flattering feeling and I share his sentiment of not wanting to leave.
theautismblog: Is there anything your family hasn’t been able to do or it’s been harder because of your brother?
We’ve definitely learned to take an alternative approach to ‘vacationing’ and have had many lessons in ‘rolling with the flow’ and not getting overly excited about sticking to the plan. One trip we had to Hawaii was a bit chaotic- aside from the grey skies and constant tropical storms, this was also a peak time of Mikey’s difficult behaviors and was a time where leaving the house was not an option. There may have been some pretty intense airport melt-downs, where people do the typical stare and point and judge. But, we all know better than to care what they think now. Mikey loves Disneyland, and even in its chaos, it’s the one place we can all go and experience just magic and contentment (even after 10 rides on “It’s a Small World After All”).
theautismblog: How is your day-to-day life affected?
Unfortunately, I only lived with Mikey part-time growing up, and now in my adult years he lives with my parents and I have established my life in Seattle. In a very in-direct way, my day to day life is constantly improved, and enhanced by having Mikey as my brother. I find a greater sense of enjoyment in my days, and he reminds me to enjoy the small things a little more. When I do have Mikey come stay the night with me, the only tricky things are 1- Getting him to shower and brush his teeth (I’ve learned that the toothbrush being wet does not necessarily mean he brushed them!) and 2- He tends to crush a little on my cute friends and has been known to slyly sneak a kiss or two in there upon a welcome hug ;).
theautismblog: Do you feel like you get enough attention from your parents?
As a child, I think the entire situation matured me in the sense that I didn’t crave, or need that intense attention from my parents. I feel like we were all in it together, and at times I needed to push my selfish desires (to stay for one more hour at a restaurant or mall) aside in the best interest of Mikey and my family. My dad and stepmom have done an incredible job raising Mikey and I simultaneously and I have never felt neglected because of their attention on Mikey. As an adult, I now partake in giving that attention and focus to him and know the unconditional love is there from my parents, but just sometimes hard to express in the midst of ‘life’.
theautismblog: What kinds of things do you do for fun with your parents? Does your brother ever affect this?
We tend to stay at home a good bit- we’ve learned that this typically is the best situation for everyone. We love swimming together, bbq-ing, watching movies, and catching up. Recently, we’ve been able to do more that includes Mikey such as lunches out, trips to the park, a recent Mariners game…. All wonderful memories!
theautismblog: Do you have any friends that also have a brother or sister with autism? If yes, how did you meet them?
I now have an amazing network and community of people who have a sibling, or child impacted by autism and this group is what motivates me, inspires me and keeps me engaged. Through the ASTAR Center, I met a girl my age who has a brother very similar to Mikey, through that connection we have become good friends and bonded over the years. That bond and connection is thick and I imagine life-long. Through my current job, I daily get to work with families, siblings (young) and professionals and it has become the single largest part of my days. And I love it and wouldn’t change any of it for the world. I wish that every sibling of a kid with autism could learn to embrace it, and learn from it, and welcome and accept those difference and find beauty in those ‘differences’. I would not be half the person I am today without my guy Mikey, and I wholly accredit my personality, my compassion, my career, and my happiness to him, and him for teaching me to just be happy.
theautismblog: Are there support groups for kids and teenagers that have siblings with autism? Are you part of any?
I have always heard great things about Sibshops and have always been eager and curious to get involved. I would love to be engaged with a shop that works with older kids and teens, where that individuality comes into play and where each is coming into their own. I think this is a crucial time where you need to understand autism and the different ways you can view it and ultimately, how that can change and shape their own lives.
theautismblog: If you put yourself in your brother’s shoes, what do you think he would say about you as a sister?
I think Mikey would say I’m his favorite (sorry other siblings 😉 ) I think Mikey and I have a bond that is unlike most I have ever experienced. I am his partner in crime, I let him sneak double desserts, I let him be goofy, I am goofy with him. We’re best friends.
Thanks again to all the siblings and families that participated in our sibling’s perspective series. If you missed the others please take a look, they all shared their stories with grace and humor. If you’re looking for more information on how to talk to your child about their sibling’s ASD, please take a look at the books listed below. Also, the Sibling Support Tool Kit featured on Autism Speaks is a great resource.
Books about talking to siblings about ASD:
My Brother, Autism, and Me, by Aishia Pope
Siblings of Children with Autism: A Guide for Families, by S. Harris and B. Glassberg
Everybody is Different: A Book for Young People Who Have Brothers or Sisters with Autism, by Fiona Bleach
Books about talking to children who are diagnosed with ASD:
Can I Tell You About Aspergers Syndrome?: A Guide for Friends and Family, by J. Welton and J. Telford
What It Is To Be Me: An Asperger Kids Book, by Angela Wine (illustrated)
I Am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High Functioning Autism, by E. Larson and V. Strand
All Cats Have Aspergers Disorder, by Kathy Hoopman
Different Like Me: My Book of Autism Heroes, by J. Elder and M. Thomas
This whole sibling series was SO GOOD! Thanks to all who participated. I found myself eagerly awaiting to open the email links when they showed up. I too learned some things about myself when I thought about the questions that were asked of interviewee (sp?) I thought about what I have learned from my daughter… this is something that unfortunately I had not thought about really. I think that what I could stand to learn from her is…. to just not get so hung up or angry on things that happen every day. Sort of, “Don’t sweat the small stuff”
The fact is that when you think about the challenges faced everyday by our kids with autism, all those quirky work relationships, things that you couldn’t find at the store, etc. etc. IT’S ALL SMALL STUFF!
BTW.. Tammy, I appreciated reading about your adult sibling relationship with Mikey. It gave me hope for upcoming adult relationship that my typicaly developing son will have with his autistic sister.