Some of you may know that I have been interviewing African-American dads of kids with various forms of autism for my dissertation. The experience has been moving, to say the least. Today’s blog is inspired by an interview I conducted just yesterday with the father of a child who is dually diagnosed with a form of autism and another developmental disability.
Unlike some of the other dads in the study, I know this guy pretty well. I met him as a college student and he was an elite athlete then and maintains a very active lifestyle now. His athletic and competitive “wiring” spills over into his life as a partner to his wife and father to his three children. In our interview yesterday, he really caught my attention at one point because he made a broad criticism of parents and adults who acknowledge kids for EVERYTHING. We laughed when he made statements like: “Everybody shouldn’t get a trophy!” Or, “That kid is NOT a winner!” The wild thing was the way he balanced that perspective when he talked about raising a child with a disability. He admitted to not knowing the extent to which he could fight, advocate, achieve goals, and push himself until he became a dad of a child with a developmental disability. And let me remind you, this brother played at the professional level of his sport for some time before entering the corporate world. An elite athlete…better than average student…academic and athletic accomplishments most of us would dream of…and he’s not worked this hard, or had this much pride in his identity, until he began this experience as a dad. He talked extensively about celebrating the small victories for his kids, and especially for the one who has the disabilities. What do those victories look and sound like for us? A word. A smile. A look. A sign. We had our own (small) victory this week. LaChan and I heard Nile yelling at Avery in frustration and we called her downstairs to figure out what was happening. She was mad at him. Now, Nile is what some would call a “tweenager”. She’s 10 and is clearly…pubescent. So, now, more than ever, she desires alone time and not wanting to be bothered. (I guess that’s what happens when girls start wearing bras and stuff…but whatever!) This day was different and she wanted to play with Avery. Well, Avery was being especially “autistic” on this day…Well, what I mean is that he really wasn’t interested in playing with his sister and was more content to spend time by himself, in his own world. He had his Avenger toys and was cool doing his own thing. But Nile wanted something different in that moment. She wanted to engage with him. She wanted him to want to play with her. So, when she came downstairs to explain, she was beating around the bush and talking as if Avery was doing something wrong. “He’s being mean and ignoring me! I mean, I’ve called him for like 10 minutes and he won’t even answer!” LaChan keenly notices what’s going on and just asks her, sensitively: “So you’re upset because he’s not playing with you?” *silence, as her eyes start to water* “Yes. He never ignores me like this. And, I don’t usually get to play with him a lot because of school and stuff, so...yeah. I want him to play with me.” Where’s the victory in my one kid’s symptoms being a little more prevalent on this day versus some others? Where's the victory when the other kid's feelings are hurt because of challenges associated with his diagnosis? The victory was in Nile being able to pinpoint how she was feeling, why she was feeling it Game. Set. Match…(for now) Happy holidays to you and yours! -mike
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My kids lied. Both of them.
I hate admitting that but it came up this week in a way that I’ve not seen before and I find myself moving between feeling hurt, frustrated, and fearful. Last Sunday, LaChan decided that she was going to forgo church in order to attend to some things in the house that would get done a lot faster with the rest of us gone. However, I told both the kids they were coming to church with me. Avery, usually one of the first awake on ANY morning, was on task. He ate his breakfast. He brushed his teeth. He got dressed. And, Nile didn’t give me any indication that she didn’t want to go to church. In fact, she responded pretty affirmatively if I remember correctly. Clearly, I misread and/or she had other plans. So, without my knowing, she makes her way down to the kitchen to fix her breakfast while I’m upstairs. She asks her mom (who didn’t realize I told Nile to get ready for church), “Mommy, can I stay home and help you?” I think LaChan gave her a “tentative” yes. I came downstairs to fuss at Nile because she was moving too slowly. I began my weekly, “We don’t EVER get anywhere on time” rant. As I was reminding Nile of how S…L…O…W she moves, LaChan looks at her and says, “Nile, how come you didn’t tell me your dad already said you were going to church?” *Radio silence with no eye contact* (This chick was trying to play us!) There was a time when everything that came out of Avery’s mouth was the truth. This brother NEVER mixed words. LaChan: Avery, do you like your food? Avery: This is NASTY! Me: Avery, you like my haircut? Avery: Daddy, your haircut makes you look like you’re bald. We attribute some of his candor to his diagnosis. He doesn’t care to filter his sentiments and communicates pretty openly and honestly. Things have always been black and white with Avery. This week, though, he was caught punching his sister in her leg and he straight up lied about it. And here comes the mediation: Me: Nile, did Avery punch you in the leg? Nile: Yes, he was punching me and I… Avery: (yelling) NO, I DIDN’T! Me: Avery, be quiet. I’m talking to Nile right now. Nile: I was saying, I don’t know why he was punching me. Me: Avery, were you punching Nile? Avery: No. *pause* Me: Avery, it’s not good when we don’t tell the truth. I’m going to ask you again and I want you to tell me the truth. Were you punching Nile? Avery: I WASN’T punching Nile. Nile: Why would I lie?! *in my head, I was thinking, because you just tried to manipulate me on Sunday, girl!!...I didn’t say that though* Me: Nile, I’m not talking to you right now. Avery, I’m going to ask you one more time. If you don’t tell me the truth, you WILL NOT test for your new belt this weekend. Were. You. Punching. Nile.? Avery: (smirking) Um, yeah, I think I did punch her. I popped him in his mouth. Twice. Then I told him that he owed his sister and me an apology. *In retrospect, I guess I should have made him apologize first and then pop him. But hindsight is always 20/20, right? I’ll remember that next time* He apologized and made his way upstairs to take a shower before bed. I was frustrated, and in that frustration I wanted to blame other influences that might encourage my kids to not be truthful. But, my counseling instincts got the best of me and realized I probably needed to turn inward vs. outward. You know, use some “I” statements. What’s at the root of when I find myself wanting to manipulate or lie? Usually, it’s because I’m hiding something of which I’m ashamed. And it’s usually pretty STUPID stuff. Like, LaChan: What’s your ETA? Me: 5 minutes *I’m really like 20 minutes away, but I don’t want to admit I left later than I was supposed to leave…You know how this goes* As stinging as his comments can be in response to a question, I don’t want my son to lose his capacity to be brutally honest. I (most times) appreciate and admire that quality he possesses. I really need to take stock of what I am doing, saying, and/or communicating that creates a barrier for him or her to telling me the truth and being transparent. My kids’ successes and failures at this point in their lives are SO MUCH MORE ABOUT ME than about them. I guess that’s why fatherhood is always under (re)construction. The last 7 days have been especially demanding for our family, particularly our daughter. As I’ve mentioned before, she’s in her first year at a private school in hopes that it would provide her with more individualized and rigorous instruction. The experience was generally meeting our expectations, from what we could tell. Her social transition was a little harder than I would have liked, but we knew some of that was related to the commute to and from school.
You see, our network here in NJ is pretty expansive. Our closest friends and family are here. Nile’s commute was about 40 minutes each way to school. I took her in the mornings because my schedule is much more flexible than LaChan’s. I would pick her up at the end of the day two days a week, while one of my best friends and my aunt would pick her up 3 days during the week. We thought it was working. We were grateful for all of the support. We kept trying to justify the decision we made for her to go there. It’s a great school. She got a huge scholarship to attend. Classes are small and she thrives in smaller, more intimate environments. She can build deep relationships with the faculty and students. If things go well, she’ll never have to transfer again because it’s a K-12 school. We had been at this schedule for 3 months now. Nile is up at 5:45 AM (she’s 10), she and I are out the door by 6:50 AM. We arrive to school usually no later than 7:40 AM. We pray together in the car once we get to school. When I pray with my kids, I usually ask them, “Is there anything you want to pray about?” Her answer seemed to be on repeat on most days. “I’m just gonna ask God to help me not be so tired.” LaChan and I had been talking about Nile’s fatigue for at least 6 weeks. Our conversations were usually centered on how WE could adjust to help her. We had already modified our schedules tremendously to make this work and were willing to do what it took for Nile to take advantage of this opportunity. But, we couldn’t because any other adjustments would be for Nile to make, not us. We can’t get her up any earlier. She can’t stay after school to deepen her relationships because of the distance from home. She can’t stay after school if she wanted to do the OTHER things (besides school!) that bring her joy and balance, like ballet or community sports. Our family was out of balance and we were not operating in Nile’s best interest. Here’s when I knew we weren’t doing right by her. As LaChan and I were hashing this stuff out one night, at one point she stopped and said to me: If this were Avery, we would have BEEN moved him. *Checkmate* And, I make no assumption that LaChan struggles with this, but I know how much my pride can be an obstacle for me making a good decision…or changing my mind and doing an “about face”. There’s a Biblical scripture that essentially communicates that acting in pride is usually preceded by something not too good. We sat Ni down last Saturday to tell her that we thought it would be best for her to change schools. Again. She got visibly upset. She cried a bit, but didn’t seem overwhelmed at the beginning of the conversation. When we asked her how she was feeling, she communicated that she would be sad because she got cool with a few girlfriends. But she really began to cry as she expressed how much she missed spending time with us because she spends most days, “in the car or doing my homework”. *insert GUILT here* LaChan and I were both moved to tears. She hugged LaChan and she whispered in her ear something that confirmed for us that we were making the right decision, even if it meant another transition. Thank you, mommy. As families prepare to observe the various religious and cultural holidays this winter season, it inherently includes school-based winter concerts.
Yaaaay! (Can you sense my enthusiasm?) Really, though, they are pretty cool. You get the opportunity to see your kids connect with their peers, teachers, and the broader school community in a really meaningful way. Well, for those of us with special needs kids, this narrative can be a bit different. Depending on your kid’s need(s), s/ he might be rolled out in a wheelchair, or walk with walking sticks, or present him or herself a little differently than his/her peers. Let me try to explain. This past week was my son’s school’s annual holiday concert. There were two groups of kids scheduled to sing: the 4th graders (older kids) and the 3rd graders (my son’s group). Each group sang for about 25 minutes, which was brilliant because I didn’t feel like it was “overkill” with the amount of people showed up. In fact, it was a REALLY strong showing of parents, caregivers, and other community members. To see that many folks felt good. The 4th graders were performing and “doing their thing”. But, there was one young man from whom I could NOT pull my eyes. He was doing “his” thing just a little more than the other kids. He sang with more pride and enthusiasm (P & E) than the others. He held his notes juuuust a little bit longer than the other kids. And he was placed right in the center of the choir, I suspect intentionally, for the positive attention that he might get. Now, I don’t know if he was a special needs kid. However, I did suspect it. My wife and I chuckled because he was singing his heart out and the entire audience knew it from the beginning. And, they encouraged it by their response to him. It was great. Then, the 3rd graders got up there. Avery previously told us that his group had 8 songs to sing, but it was a medley, which kept it moving (YES!). But, my kid’s presentation would likely be similar to the 4th grade boy we saw just a few minutes earlier. And it sure was (I’m laughing as I type this!). Among Avery’s strengths, like many kids with autism, is his ability to memorize. I’ve also mentioned that unlike some other kids with autism, he is very social and expressive in his language and behavior. That trait is less prevalent in kids with autism. And now it’s time to sing. Mine was the kid who held HIS notes just a little longer than the others. Mine was the kid who would look down the choir line and make sure the other kids were singing their lines…because you know HE knew their lines like he knew his own. And, there was some “minor” choreography. Well, for Avery, there’s NO SUCH THING as minor choreography. The boy loves to dance. So, naturally, mine was the kid that waved his hands and leaned back and belted loud notes in ways that were a little more dramatic than his peers Good thing they didn’t have a 2-step! He might have jumped out of the choir stand! All LaChan and I could do was laugh and celebrate our guy…our special guy…our different guy, who we believe has been beautifully and wonderfully made. After the concert, he found us and told us HE did an AWESOME job. Yup, that’s my kid. As the father and husband in a special needs family, I’m hopeful. My mood doesn’t always reflect my hope as much as it should, but in the grand scheme of our everyday experiences, I remain hopeful that my children will have meaningful lives now and into their adolescence and adulthood.
I definitely fit the profile of a dad who spends a fair amount of time thinking about how his kids are perceived by their peers and other authority figures in their lives. That comes up in a number of ways with Nile and Avery. For example, this was the general exchange between Nile (daughter) and me after a school field trip: Me: Hey, Ni. How was your field trip today? Nile: It was cold, but it was good. We collected fossil samples. Me: That’s cool. How many did you collect? Nile: Two. Me: (after a pause) You guys were out there for a pretty long time. How many were you supposed to collect? Nile: I don’t think there was a specific number. Me: How many samples did other students collect? Nile: Most people collected like 4 or 5. Some collected more. Me: So…you had the SMALLEST number of fossils in the class? *probably the wrong message being communicated with my last question* Now, consider my special needs guy in the context of peers and instructors while participating in his karate class while I watch on the periphery. His instructor (who happens to be a man) is guiding the class pretty efficiently and Avery’s meeting the expectations well. He’s following directions, his forms look good, and he’s showing P & E (pride and enthusiasm). All is well…in my world. A female instructor then moves to the front of class and is given permission to lead a segment. Because Avery, at the time, had not had ANY female karate instructors, I imagine he had a tough time making sense of what was happening. Autism can do that to kids sometimes. For Avery, once he adjusts to a routine it can be REALLY difficult to introduce something new without preparing him for the pending change. And, here was an unexpected transition, with no explanation or context. Like clockwork, MY KID has a great response, loud enough for the entire class to hear. Avery: Hey! Girls can’t lead karate class! *Jesus be a fence. We’re about to get kicked out!* Thankfully, the instructors were gracious, as were other parents and older students who didn’t take offense to what Avery just communicated about gender role stereotypes. In fact, they did more laughing than I would have expected. I was concerned that we may not get asked to come back after that. Again, I found myself overly concerned about how people perceived my kid and our being stigmatized as a result of that perception. Even with my own challenges of thinking too much about my kids in the context of others, I’m thankful that I can remain hopeful and pray that other parents of special needs kids can become and remain hopeful, too. My kids have unique gifts, abilities, and perspectives. And as a result, I am assured they have something great to contribute not just to my life, but to the lives of folks around them in school, at the playground, in our church, in our community, and everywhere else they go. I was reminded to be hopeful this week after seeing a segment on ESPN’s Sportscenter. It’s the story of a teenager with autism who is a die-hard Rutgers football fan. The video reminded me that it was his unique gifts, abilities, and perspectives that provided him in incomparable opportunity within his community which now can be celebrated worldwide. It’s my hope that you remain hopeful after seeing this amazing video about Anthony Starego. Check out, “Kick of Hope” by clicking on the following link: http://espn.go.com/blog/bigeast/post/_/id/39662/video-kick-of-hope Peace, -mike |
AuthorI'm Mike. If you have an interest in mental health, family functioning, and disability advocacy, this blog may be of interest to you. Archives
January 2016
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