(Approaching the keyboard, hesitantly)
Has it been close to two years since my last blog entry? (Looking at keyboard to avoid “eye” contact...and accountability) Ohhhhhh, snap! I’m looking back and noticing my last entry was in MARCH. MARCH 2014. My lawd. My bad. LaChan almost stopped encouraging me to write because I kept avoiding it. She was annoyed. Then, two things happened. We saw some good friends over the holidays - two of whom blog themselves - and we were discussing our own writing roadblocks. As we talked, LaChan reminded all of us about the rhetoric for OUR blogs (versus the rhetoric present in other blogs). Here’s the context - I was telling her how hard I found it to code switch my writing styles. It’s the difference between making a formal presentation to your professional colleagues and chopping it up with friends around the kitchen table with good music, wine, and an almost divisive, controversial topic. She said to all of us, emphasis on ME (notice how I personalize EVERYTHING): “...You are using your head when you write to your colleagues about research and what you are discovering through that research. But you have to write with your HEART when you are blogging. What is your heart telling you to say, in the midst of what you are discovering?” As my man Ken Swain said in the moment - “LaChan drops mic and walks away”. It was a cool moment. The other thing that happened was an episode with my son that I’d like to share with you. It was CAAARRRRAAAAZZZZEEEE! I’ve shared in another entry that with the new diagnostic criteria for autism spectrum disorder, there might be some medical and mental health professionals who would not render an autism diagnosis for my son. That has essentially happened in the last year. And, while I understand this doctor’s rationale, I don’t agree and I respectfully (and firmly) told him why I disagreed. Of course, we’re getting a second opinion. The doctor we met that day told Avery and me - among other things - that he “beat it”. Wayment. You mean he doesn’t have autism anymore? You have to understand that autism in my house is like...is like… ...is like your uncle who moves in with you when you were a kid. You really don’t like him being there. Initially. He’s like your mom’s brother who she can’t stand because he can’t get his stuff together. And your dad doesn’t like him because HE DON’T PAY NO RENT! Over time, though, you start to connect with him. His contributions may not be financial, but he contributes in other ways. He pushes you to see things differently. He helps you see where you’ve got some areas for growth and and the way coaches you is a bit more finessed and sensitive than your parents’ way. Over time, his role in your family contributes to your family’s overall identity. Sooooooo, you leaving? Now? He’s told you this before. You know, in your private conversations, not the ones actually with your parents. Then, something happens to remind you that, THIS FOOL AIN’T LEAVING!! I realized autism wasn’t leaving on Sunday. One of Avery’s major challenges is in executive functioning. Requiring him to plan how he will get to his classes on time, with all of books and supplies, with two chances to visit his locker in the process is...like...a trainwreck. He can get from A to B, but getting from A to D is a different animal. So, peep this. We went to church yesterday (like we do every Sunday) and then to my grandmothers’ house to visit and watch a little playoff football. This schedule means that we don’t get home as early as we typically would if we weren’t visiting. Well, on this particular day, the dog wasn’t able to refrain from taking a dump in the house. On Avery’s bedroom floor. Unbeknownst to us, Avery comes downstairs telling me - in a really socially awkward way - that, “...I’m not sure, but I suppose Bentley pooped on my floor while we were at Grams’” *sigh* I respond , “What makes you think that, Avery?” “Because I just stepped in poop” “In your socks?!?” “Yes. In my socks. But, I cleaned it up.” (I’m even more scared for the answer I’m about to get when I ask…) “Cleaned it up with what?” (I thought I was calm but my body language clearly communicated something different) “One of the hand towels. Then, I put it in the hamper because it was dirty.” (My word is my bond, I CANNOT make this stuff up.) OF COURSE, he put it in the hamper, BECAUSE IT WAS DIRTY. Because that is what you are supposed to do with dirty clothes and towels. Logical. Sequential. Linear. Nevermind there is DOG SHIGGIDY on the towel in this boy’s hamper! Did we recover? Yeah. Thankfully, he actually folded that nasty towel, so it didn’t touch his other clothes in the hamper. You know I washed them anyway, though. Twice. The doctor with whom we met a few weeks back told us that Avery may have executive function disorder, ADHD (for his distractibility...but he doesn’t present as hyperactive), and possibly mixed language disorder (which I totally dismissed). I shared that the combination of his symptoms (executive functioning challenges, perseverating and hyperfocusing, social challenges, and his developmental delay) all make a case for an autism spectrum disorder diagnosis, even if considered mild. That uncle ain’t moving out. At least, not yet. Whether he decides to stay or go, I’m grateful for the process of getting to know and learn from him. Happy New Year, yall!
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Play dates for kids with special needs are important…and often tricky. A few Sundays ago, Avery and I find ourselves at the local Chuck-E-Cheese with Avery’s buddy Jonathan, and Jonathan’s sister, mom, and dad, in addition to about 50-60 other adults, children, and employees.
Jonathan and Avery have been buddies since last year, and Avery has been pretty consistent in asking for a play date. Can Jonathan come over? Can I go over Jonathan’s? Can you ask Jonathan’s mom or dad when we can play together? The date is set. Sunday’s NBA schedule and post-church nap are sacrificed to appease my son and his homie. Hey, in this season of Lent, that’s the least I can offer, right? The boys are set with plenty of tokens and sent to play games as the adults find a booth to get better acquainted through conversation. Thankfully, I do conversation pretty easily. Me: Thanks for agreeing to come today. I’m glad the boys are finally able to get together. Mom: Yeah, Jonathan has been really bugging me to play with, Avery. Dad: It’s a shame the boys aren’t in the same class again this year. Jonathan’s parents have had some prior interaction with LaChan, and we know Jonathan is diagnosed with ADHD (Attention Deficit Hyperactivity Disorder). Like Avery, he is in an inclusion class staffed with both a general education and special education teacher. Conversation is smooth. The boys seem fine. My anxiety level drops. Trying to anticipate these interactions is a little stressful for me. The boys know each other and have their own social patterns, but I don’t really know these folks. There’s no reason to think it’s going to go badly, but you just don’t know. I'm just anxious that way, I guess. After 30-40 minutes, our conversation is becoming genuine, and I appreciate it. The proverbial “trading of stories” is happening. Special needs parents know how this goes. Me: So, what’s your experience been like with Jonathan’s caseworker and teachers? Dad: It’s been pretty good. We’re happy. They’ve been awesome with and for Jonathan. How about you? Me: Well, we had some challenges at the beginning of the year, but things are smoother now. I had to remind myself to be more of a help than a hindrance to them so they can support Avery well. Then it happened…it had to be a dream…or nightmare. A cute little girl, about 7 or 8 years old, is crying with an ice-pack on her arm. A woman – who I assume to be the girl’s mother – sends a young teenage boy into the jungle gym and gives him specific instructions: Go find the &#@%^$# who hurt your sister! Sitting in the booth, we stop breathing. We watch…fearfully, while trying to stay calm. Yet, my mind is running a full sprint. PLEASE, Lord, don’t let that child be Avery. Wait, Avery doesn’t bite. If he bit somebody it would be TOTALLY out of character. Was he threatened? JESUS BE A FENCE (and a mouth guard)!!! A manager has come to the area where we are seated and instructs all the children to come out of the jungle gym via the slide. As each child comes down the slide, the girl who was bit was ready to identify who assaulted her. The girl’s brother and (rightfully) angry mother stand with her, staring holes through each kid as they came down the slide. Avery comes down the slide. I’m holding my breath. She confirms Avery did not bite her. I exhale. I immediately tell Avery to come stand with Jonathan’s parents and me as we wait for Jonathan to come down the slide. He finally emerges. That’s him!!, the girl shouts and points. I stop breathing, again. Jonathan’s parents’ faces flush with color (and I suspect a bit of humiliation). Relief, sympathy, and anticipation fight for dominance in my head and heart. The next thing that happened was so emotionally charged, predictable in some ways, and unpredictable in other ways, that it makes absolutely NO sense. The exchange went something like this: Jonathan’s mom (to the mother and daughter, while visibly embarrassed): I am so sorry. I cannot believe he bit her. (to Jonathan): Jonathan, you CANNOT bite people! Why are you biting people?! Jonathan’s disposition is absolutely flat. He doesn’t look excited, remorseful, happy or sad, which likely made both mothers even more frustrated. This may be partly symptomatic of Jonathan’s diagnosis, though. Mother: Do you know that your son bit my daughter?! He can’t do that! He has to have some kinda consequence for doing stuff like that! Jonathan’s mom (trying to acknowledge mom’s feelings): I know. My son usually doesn’t do this kind of thing. I’m sorry. Do you know what happened in the gym? Did anything happen to my son? He has special needs… Mother (who is FURIOUS): Well, you need to drug him up or something because that’s just inappropriate!! I have to jump in here. Me (to mom, stunned): Wow! Is that necessary? These boys have special needs. That’s MAAAD disrespectful. Mom (to me): Well, she then she needs to put him in a cage and throw away the key. Me (to mom): You’re not even right for that. She storms off, still clearly upset for a variety of justified reasons. Jonathan’s parents are shaken. Avery is crying quietly, and none of us can tell how Jonathan is making sense of what just happened. I need to note, that at this point, Jonathan’s older sister has completely disconnected from the entire display. We are all actors on a stage now. Every Chuck-E-Cheese customer just bore witness to the unique tension for parents raising children with diagnosed differences, whose needs do not present physically but behaviorally, and who don’t dare to justify their kids’ inappropriate behavior but still need to protect them from hurt, but insensitive people. The kids are able to finish their play date, but things are different now. Avery let me know that the big brother who came to defend his sister used words towards Jonathan and not physical force. Thankfully, Avery was fine, at least physically. My feelings were injured, though. That mom’s anger was entirely justified. If a child bit Avery and pained him to tears I shudder at how LaChan would respond. *cue DMX – Y’all gon’ make me lose my mind, up in here, up in here!!*
“Weeping may endure for a night, but joy comes in the morning” That verse is found in the book of Psalms chapter 30. It’s an awesome reminder that while we have experiences that are really hard and painful, that we can have hope that things can get better. I’m relieved that the manager at Chuck-E-Cheese affirmed that while the episode was ugly, they were committed to ensuring all children – including special needs children – have an awesome experience. I thanked for her for that. I’m relieved that the mother of the girl eventually sent an apology for her behavior through the manager. I’m relieved that Jonathan’s mother and I have exchanged text messages about another play date in the coming months. I’m relieved that the day’s emotional injuries sustained by the girl and her mom, Jonathan and his family, and Avery and me, won’t prevent us from getting back in the game. About year ago, an awesome group of fathers of children with autism allowed me to interview them – six African-American, college educated men, who were married to the mothers of their children with autism, and very well networked. Their careers were diverse and included: pharmaceutical sales manager, educational software salesman, business manager, banking executive, graphic artist, and information technology professional.
They answered questions about the ways they learned about fatherhood, their own fathering experiences, and how being African-American influenced their experiences as fathers. They openly shared how, at times, they believed their race influenced the quality of the services offered to them and their children with autism by doctors, schools, and other providers. One father said he made a conscious decision to not assume the posture that could be interpreted as the “Angry Black Man”, but rather one that might be considered less intimidating or confrontational. This posture he called the “Help Me Understand Man”. The "Help Me Understand Man" asks more questions, makes fewer assumptions in times of conflict or misunderstanding, and is potentially perceived less threatening to his child’s teachers and service providers. I could learn a thing or two from the ‘Help Me Understand Man’… In the last 4 weeks, I've had experiences with my son’s teachers in which I've assumed both postures. The circumstances have sadly reminded me – again – that race still matters. It matters for me, AND it matters for my son. I would argue that Avery is not being challenged academically and socially as much as he should be challenged; my wife agrees. His teachers, while well-intentioned, may not appreciate the depth and importance of his education RIGHT NOW as a 4th grader. However, we know and are absolutely aware about the social and developmental transitions on the immediate horizon for my son with a different-ability. These middle years are critical for our young men. We know from research that the educational experience and focus shifts from academic to social. What are we doing to meet their social needs? That is the question I posed to anyone who would listen. Do you remember this time for yourself? If not, allow me to remind you what you may have been experiencing developmentally. You likely became a bit more aware of interpersonal dynamics. What people said about you – in the classroom, on the basketball court or soccer field – began to matter a little more. You probably had your first crush. S/he was the finest person you’d seen: EVER IN LIFE!!! How people responded to you mattered, even if just a little more than before. Other people, and their opinions, likely influenced your decisions at that time. Do you remember? I remember. LaChan remembers. Nile remembers. And Avery will remember. After numerous email exchanges between us and his teachers, we found ourselves in a “spirited” phone conversation, only precipitated by LaChan’s comment ‘I can be at the school in 20 minutes’. My anger was palpable. How did I know? After about 3 minutes, I was yelling. My anger reflected frustration because his teachers were non-communicative. They didn’t have the same sense of urgency for addressing the needs of a young black male student as I did, let alone one with a so-called disability. My anger reflected how they didn’t appreciate the idea that– because of his diagnosed developmental differences AND his identity as an African-American boy – he could not afford to have school experiences void of rigor and challenge. Apparently, I didn’t realize I was yelling. After interrupting me, LaChan redirected the conversation and tried to reframe my concerns. I became an angry Black man in that moment. My son’s needs were being overlooked. The teachers responded (to my yelling) by telling us, “we didn't think he needed any additional support because he’s doing so well”. Wait, what? If one of my kids’ strengths is in memorizing spelling words – and he keeps getting perfect scores on spelling tests – WHY DOESN'T HE GET SPELLING WORDS THAT ARE MORE SOPHISTICATED?!?!?! Giving him more sophisticated words is an example of what educators call differentiated instruction, or adapting their teaching style and technique to meet students’ needs. When did teaching to the middle become okay? When did ‘normal’ become the new craze? What’s so special about normal anyway? I was full of questions that weren't being answered so I did what many of us do. I turned inward and became reflective. My devotional time for me is just that. As I prayed one morning, I wondered two things: Do Avery’s teachers experience me as a resource or an obstacle? Could the anger I expressed create a contentious environment for Avery? Avery’s teachers aren't spiteful, but people are susceptible to misdirecting anger, frustration, or impatience. My son doesn't deserve any of that. In the most recent days, my posture and Avery’s teachers’ posture has had to change. They are more willing to listen and hear feedback, and I am more willing to do the same. Now, my questions reflect a desire to understand. I could ask… Why? Why you haven’t given Avery more sophisticated spelling words? Why haven’t you responded to my emails about Avery’s behavior in class? Why haven’t you asked ME what would help my child to be more successful? Instead, I’ll say, Help me understand... Help me understand how these spelling words are going to challenge him academically. Help me understand what would help you communicate with me better about him. Help me understand what you need from me to support you in understanding my son’s strengths and growth areas. It’s immensely frustrating to have to reframe my concerns so that Avery’s faculty and staff don’t feel threatened. It’s more frustrating that his teachers seem to not appreciate his trajectory is inherently different because of his race and other ways he is different from his peers. LaChan and I have to trust that Avery’s teachers will grasp how important this is for him and us. And, in the most ideal circumstance, they would recognize that this experience is important for THEM, too, as educators. So, what am I learning in this experience? I’m learning that when we meet with his teachers and therapeutic staff face to face within the next 10 days, I need to think more about my son than about how offended I’ve been with his teachers’ behavior. I’m learning that it’s less important to fuss about their responsiveness to me and more important to help them in their responsiveness to my son’s needs. I’m learning that I better embrace the Bible verse, Philippians 4:19, where it reads, “And my God will liberally supply your every need according to His riches in glory…” Help me understand, man… I’m happy to share with you via my blog tonight, as we embark on the new year. Every excuse has been made as to why I haven’t been writing more consistently, and I’m reminded that:
Excuses are tools of incompetence which create monuments of nothingness. And, those who specialize in using them seldom accomplish anything else. Therefore, there will be no excuses. Many of you may be familiar with that adage. This 2013-14 school year has started well for the kids. Concerns with my children’s teachers are fading and they’ve shown a genuine interest in their academic, personal, and emotional development. Solid. Nile and Avery’s penchant for the performing arts -singing, dancing, and performing- are old news, although never without excitement. This year, Avery's 4th grade year, has been a bit different. Avery wanted to join the band. Immediately and naturally, a percussion instrument came to mind, with all of the banging he does around the house. The unused full set of drums (thanks to Christmas 2010) and his interacting with many drummers in his short life made percussion the obvious choice. In fact, he’s interacted with all kinds of musical artists. Though, I still thought it would be the drums. I didn’t have the chance to attend Back to School night with LaChan this fall, but when she apprised me of the evening and her conversations with teachers, she found out THIS brutha told the instrumental teacher he wanted to play the TROMBONE. THE TROMBONE?! Furreal?! Let me make this aside: autism and I have had an ongoing conversation for the last six and half years. My perceptions of autism have tried to persuade me from allowing Avery to experiment with new activities or have new experiences. And I hate to admit that my fear has been pretty persuasive sometimes; I’ve allowed it to convince me that less variety, less activity is better for Avery because an acute set of skills versus a broader and wider set of skills would be better for Avery in the long term. When I heard about his interest in the trombone, my hesitant thoughts said… Sooooo, you’re really gonna let him play the trombone? Avery is a small guy like you and the instrument is probably as tall as he is tall. His fine motor skills are not developed enough to facilitate his assembling the instrument, blowing strong enough, disassembling it, and putting it back in his case. Those are HUGE challenges for kids like Avery. Shoot, AVERY DOESN’T EVEN KEEP HIS ROOM OR HIS SCHOOL DESK CLEAN!! What makes you think that he can handle and play the trombone?! Autism’s voice – and my own insecurities – rang pretty loudly in my ears. I didn’t want my guy to be a target of those insecurities. I know, all too well, that kids with any form of physical, learning, and/or social difference are more at risk for bullying and other cruel behaviors by their peers and some adults. In mental health, we call this projection, or the act of assuming that one’s own insecurities and limitations (or other general assumptions) exist for someone else. I was TOTALLY projecting my insecurities on to my boy. Because let me tell you this, Avery had NO CONCERN about his ability to learn how to play the trombone. He’s confident and has a healthy level of self-esteem. I believe his exact words were, “I’m gonna rock at the trombone!” If only my confidence matched his. As counselors, our work with clients (in schools, community/clinical, rehabilitation, and/or career settings) is grounded in a strength-based perspective. That is, we work hard to use our clinical skills to remind and make clients aware of their strengths, even in the context of the challenges they confront. LaChan has always said, “We have to find a way to use his strengths to supplement his weaknesses”. But for me, this model is in direct opposition of the deficit perspective that is so prevalent for individuals – and their families – who live with any form of difference. I had to allow God to remind me of the passage that says, “In my weakness, God’s strength is made perfect.” Whatever challenges Avery faces are totally worthy of being absorbed by God’s PERFECT strength. Autism’s voice is present; I won’t and can’t deny that. Sometimes it reminds me of how awesome it is, and sometimes it reminds me of its limitations. Sometimes it catches me in a moment of hope, and sometimes it catches me in a moment of unbelief. Sometimes it reveals the possibilities, and sometimes it confounds me with its complexity. However, I won’t allow autism’s voice to be so loud that it overpowers my faith. Autism isn’t something that has to be overcome, remedied, dismissed, or ignored. It is our family’s gift that helps me to see my son for who is really is--how God sees him. Fearfully and wonderfully made! So I embrace my guy’s opportunities to explore and develop his artistic interests and abilities. I celebrate his trombone playing skills (although sometimes it sounds like a steamship), I admire his perseverance to overcome its inherent challenges, and I relish the look of satisfaction on his face after a full 30 minutes of ‘Hot Cross Buns’. I know there are people with stories that are very different than my family’s story with autism. But we are committed to living well with autism. Best wishes for an awesome 2014!!! -mike It’s Back to School Night and I’m tired. My sleeping pattern and I have not been in much agreement over the last few weeks, especially on Monday nights in anticipation of long Tuesdays. In fact my sleeping pattern assumes an entirely different personality on Monday nights.
I’m like: “Who are you and what did you do with the pattern that’s here with me every other night?” His reply: “Yeah, um, that pattern is with LaChan and you’re hanging out with me tonight. Now go’head and turn on the west coast edition of Sportscenter.” It only makes sense that Nile’s Back to School Night was on a Tuesday night. My body language was screaming, apparently. I’m the kind of person who unintentionally communicates boredom - even annoyance - if I’m not totally engaged with you. The sad thing is that’s NOT what I want to communicate. I’ve worked on it for years, but on Tuesday night LaChan had to (firmly) whisper to me during one teacher’s presentation, “Mike, you look annoyed.” Oh, snap! This teacher probably thinks I don’t like what s/he is saying. Let me get myself together! As we listen to the teachers’ presentations I notice a pattern: Nile has two teachers in most of her classes: a regular education teacher and an inclusion teacher. Inclusion teachers are usually certified Special Education teachers who provide additional/supplementary support to students with special needs. Inclusion and regular education teachers co-teach classes. Students – with special needs or not – get the benefit of more individual instruction and attention with two teachers in the classroom. HOLD UP, THOUGH… I don’t remember the last time Nile was in an inclusion classroom. Avery, on the other hand, has been in inclusion classes for his entire time in school. He’s a student with an Individualized Education Plan (IEP). This is where my (ignorant, shameful) bias surfaces, because at some point during the night I began to think: Well, that’s appropriate for him because he has a form of autism. I don’t want that for her because the special needs kids might…. I’ve heard that speech before. It's come from some parents of typically developing students who voice concern over their kids being in classes with special needs students. As a counselor and educator, my IMMEDIATE response to that sentiment is usually something like: I understand your concern. The good thing is that there’s a fair amount of research that tells us typically developing students can benefit from being in classes with special needs students. The experience has the potential to help the more academically advanced students develop emotional maturity, develop an ability to show empathy, and be more likely to advocate for their peers when they perceive something unjust. And it DOES NOT reduce the rigor of the educational experience because teachers can differentiate their instruction to meet their students’ individual needs. Why didn’t I remember this for myself and my own daughter? Why did it take so long for MY OWN “script” to emerge and for me to REALLY APPLY it in my own daughter’s school experience? Do I really believe the script? I think I do, but I also realized that my own negative assumptions can be at work – and I don’t even know it. The evening reminded me about my need to trust the process. What does that mean, you ask? For me it means trusting that Nile is going to benefit from a comprehensive, rigorous educational experience that includes engaging with students more, less, and differently talented than her in her classes. It means making sure I’m accountable to ask questions of and respond to questions by her teachers. It means extending a professional courtesy to all of the educators, students, and families that comprise our learning community by expecting the best in them – and not anything else. I’m excited and I hope you are excited for your children this year. To all of the parents and caregivers whose kids have started school, I pray for an awesome and enriching year! Let’s agree to push our kids – and ourselves – to learn, grow, and change for the better this school year. Peace, -mike I think my kids would describe as me as a “visible” father.
I have plenty of friends who are visible fathers, too. Visible fathers sometimes live with their children and some do not. They have a consistent and generally positive presence in their kids’ lives. They work hard to divide responsibilities associated with raising the children whether in a romantic relationship with the other parent or not. The children’s teachers know these fathers, doctors know these fathers, dance instructors know these fathers, and coaches know these fathers. They are present. They are involved. They are accessible. My children have seen me assume an even more visible role over the last three years because of my status as a full-time student. My classes were often in the afternoon or evening, and I had a part-time job (20 hours/week) which freed up my schedule in a way it has never been free since my college days. LaChan continued to work full-time to support us financially as I worked through my program. Most days, I saw the kids off to school, picked them up from the bus stop, and made babysitting arrangements if my classes didn’t allow me to pick them up. Their schools called me if there was some emergency (we’ll define emergency loosely…that could range from Nile or Avery forgetting a book to one of them needing to be picked up due to illness). The point is, I was and have been the guy for several years now. Teachers emailed me. Doctors saw me. Specialists scheduled with me. I am visible. Being home now in South Jersey, with easy access to Philadelphia, has its privileges. Avery has had some health challenges recently, and we’ve been visiting with various specialists to figure out what may be happening. A recent visit to a specialist in Philly reminded me how infrequently this doctor may be used to seeing my pedigree of father – an involved father, a visible father – in her practice. (I think I just put my fists on my hips and stuck my chest out like Superman…anyway) Make no mistake, the doctor was great. She was sharp, intuitive, sensitive and a clear communicator. LaChan and I walked in to her office, and after brief introductions, she asked the question: So mom, what brings you in today? (Wait, what?!?!) I’m so used to running the kids to the doctor’s offices, the physicians usually direct questions to me even when LaChan and I visit together. No big deal, though. LaChan gave a clear and complete answer about our concerns. As the conversation ensued, her verbal and nonverbal language was directed solely at LaChan. I don’t remember her making much eye contact with me as she continued to address her questions to “mom”. On the occasion when I inserted myself into the discourse, she engaged with her eyes and her body language. Her shoulders turned and faced mine. She listened attentively. When my statements were done, though, she continued engaging LaChan. One of two things was happening during this visit. (1) I was TOTALLY overreacting to not being point-man in this moment. Maybe I was having…a…silent…tantrum. Or, (2) the doctor was just behaving in a slightly biased way because of which gender of parent she sees most frequently in her office. Or, maybe it was a little of both. Appreciating and acknowledging how our gender biases are (always) working is important. It happens the other way around, all the time. The server, 8 out of 10 times, forwards me the bill at a restaurant. Sometimes I have to stop myself from telling him or her: Listen, I ain’t got no money. If anyone is paying for this meal, she is. On this particular day in Philly, the doctor defaulted to mom. She may not have been used to engaging with a visible, involved father capable of contributing to the conversation, and I may have been a little sensitive that day. So I say that all to say… Happy Fathers’ Day to the visible fathers contributing to their children’s lives. Happy Fathers’ Day to the fathers aspiring to be more visible and make the decision to be more involved, accessible, and present. And, Happy Fathers’ Day to the invisible fathers that still need more nudging and encouragement to become more relevant in their children’s lives. Our families need us, whether we are biological fathers or functioning in a fathering role to a child who does not have a visible father. Enjoy the day! And, take pride in being visible! Those of us who work in mental health have a responsibility to stay current on the changes to how people are assessed and possibly diagnosed with mental illness. The recent publication of the new DSM-5 (the manual widely accepted as the source for mental illness diagnoses) has undergone some significant changes that affect those of us connected to autism. In fact, this newest version has revised the criteria to be diagnosed with autism. If you’ve read any of my prior blogs you may know my son Avery was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) in 2005 when he was about 21 months old. It was a disorder among the larger umbrella of Pervasive Developmental Disorders and was considered to be on the “autism spectrum”. My family and I have adjusted to the idea of autism being a part of our experience…and our identity.
The new DSM-5 has eliminated PDD-NOS and Asperger’s Disorder as conditions. Wait, what? We are members a larger community who have struggled with, toiled over, grieved about, and continually strive to be emancipated from the stigma of disability. I try to have a strengths-based perspective about Avery’s condition, and we all do our best to support him in areas where he struggles. It's not much different than how my wife, kids, and friends do the same for me as someone who has Type 1 diabetes AND LOVES cheesecake. The next time he has an evaluation, they’ll offer him a different “name” for his challenges. I'm conflicted. We’re used to this name! We take pride in this name! We identify with this name! We’ve overcome with this name! What will the name be, based on the new diagnostic criteria? If I had to guess, I would say Autism Spectrum Disorder-Level 1. This particular diagnosis, I believe, represents those who meet diagnostic criteria but need the least amount of intervention and support. Have you ever been associated with a group of folks given a name meant to disparage, but somehow, over time, you found value in that name? I remember being a kid and hearing people refer to some people as red-headed step children. It communicated a person being out of place, not quite fitting in. Have you ever heard members of historically marginalized groups refer to themselves with the same labels originally meant to be oppressive and stigmatizing? Somehow those labels actually became terms of endearment to some in the group. You know where I’m going with this. What are those labels for you? Which ones have you chosen to reconstruct and redefine? There are some who are happy about how the diagnostic criteria for autism have changed. But for others, like those in my family, faith has helped us redefine and make our own meaning of autism even when others perceive it as negative or insulting. It really brings to mind Maulauna Karenga’s Nguzo Saba, or Seven Principles, of Kwanzaa. Among those principles is kujichagulia (pronounced koo-jee-chag-oo-lia) which in Swahili means self-determination. Its definition is, to define ourselves, name ourselves, create for ourselves, and speak for ourselves. I hope those of us in the autism community continue to show the courage to define ourselves, name ourselves, create for ourselves, and speak for ourselves in ways that communicate we’re beyond any label. Well, really it wasn’t today; it was last week. And, it wasn’t just me. LaChan, Nile, Avery, and I called our third-ever family meeting. It was the much anticipated discussion about autism. During conversation, we told Avery that he has a form of autism.
I must admit: I was scared to do it. I was so anxious that I envisioned the scenario over and over and over in my mind in the days, hours, and minutes leading up to the conversation. It had been brewing for weeks now. And, with his birthday party on the horizon, we had to make a decision. Last Sunday, I went to church alone. LaChan kept the kids home to help prep for Avery’s bowling birthday party, which was later that afternoon –at least 35 children and a host of parents would be there. And NOW, he was 9. Nine year-olds are socially unpredictable – they bully, tease, play jokes, tell-half truths – but that’s another conversation. After service, I disclosed to my parents that LaChan and I planned to tell him. I asked that they pray with me and for us, and they unhesitatingly obliged me. We prayed, thanked, and cried together in anticipation. Well, I was the only one who cried. Why was I moved to tears? My emotions were mixed and scattered. Part of it was guilt. Why did we wait this long? Part of it was fear. What does he know? Will he think there is something wrong with him? Part of it came from just acknowledging how BIG and OVERWHELMING raising a child with special needs can be as a father. In this moment with my parents, I admitted that I was overwhelmed. And, again my parents were there offering their support as I worked through those feelings. I hoped that I’d be able to provide the same kind of support to Avery as my parents did for me. When I got home, we called the kids into the bedroom. Man, I was nervous. A 20 minute conversation felt like ages. But, here’s what I remember most. As the kids sat on the bed with LaChan, I knelt on one knee, leaning against it. It probably looked like I had a belly ache. LaChan opened up the conversation saying she and I wanted to talk to the kids about something important. At one point she asked Avery directly: Do you know what autism is? Avery responded, “Um...it’s like an ability or disability. And, there’s no cure.” Okay, somebody’s been talking to him about this. And it ain’t been me! CRAP! LaChan: Do you know anybody with autism? Avery: No. I don’t think so. LaChan: Do you remember…?(she began to name a bunch of his friends from a social skills program in which he used to participate) Avery: Yeah, those are my friends from Pennsylvania! LaChan: Guess what Avery? They have autism. Avery: They do?! LaChan: Yup. And you know what? So do you. Now there was probably only a 1-second pause, but to me, it felt like FOR… … …EVER Avery: (smirking) So, I was right. Someone DID tell him before we did. This is EXACTLY what we didn’t want to happen. Insert GUILT here. I jumped in. Me: Avery, when did you think you had autism? Avery: When you and mommy gave me my Skate for Autism shirt. We used to host an annual Skate for Autism event in April as an outreach program through our nonprofit organization. That was EASILY 5 years ago. Clearly, he had been paying attention. Had we already told him in other ways and not known it? Me: Well, Avery, autism is part of what makes you a really cool brutha. Autism is what helps you have a GREAT memory and be a great martial artist. It is why you are such a great math student and follower of the rules. It helps you read really BIG words and why you like to rub our noses. LaChan: Yup. It helps you in those ways, Avery. But sometimes it can make things difficult, too, which is why it’s important to ask for help. Autism is sometimes why you don’t like eating anything but french toast sticks for breakfast and why you don’t like changes in your schedule. That’s when you have to be really brave to do things that are good for you, but sometimes don’t feel so good. At this point, ALL of us (Nile included) were watching to see Avery’s reactions. He didn’t seem overwhelmed. There was no climax or dramatic moment, which is what I wanted. We didn’t talk in terms of “disability” and “deficit”. Our language was about “differences” and “preferences”. We asked him if he was okay with what we talked about. He, very matter-of-factly, stated he was fine. Of course, he wanted to hug us all, which makes total sense because he usually seeks sensory input when something is a little new or unfamiliar. He reached in for what seemed like a kiss and rubbed my nose. That’s my Avery… I was relieved. I was thankful. I was finally breathing. He had a great birthday party and hasn’t said anything about autism since that conversation, except when we all wore blue on Thursday to support Autism Awareness Day. My concerns are still alive and well, though. Someone else might talk about to him about autism in terms of disability or deficit. This is exactly where my faith has to outweigh my fears and concerns. That’s a daily decision for me. I checked in with Nile a few hours later and she seemed in good spirits. She thought our conversation went well, stating she was glad to be a part of it. Her voice and feedback is just as important in this process as anyone else’s. The next day, Avery’s teachers received an email from me about the conversation. Hearing almost immediately from his school counselor (who is a GREAT counselor), I asked they work hard to communicate the same things about Avery’s differences if he ever asks about them. I also asked that they share the email with others in the building who may find it useful. This was especially important to me because it’s Autism Awareness Month and schools are talking about it. We are all wonderfully and carefully made - differences and all. I can now celebrate those differences WITH my son, not just about my son. I’m really excited to move closer to the completion of my dissertation. This culminating project has been time consuming, emotionally demanding, and fascinating all at the same time. I’m learning so much from these dads of kids with autism. I’m really indebted to them for their openness and transparency.
The time I’ve spent with them has inspired my post today. Our meetings have reminded me of something pretty simple, yet profound. Love shows up and takes action. Not rocket science, right? Well, consider this. I assume many men are not socialized to engage with our emotions. I’ve mentioned in a past blog my agreement with a mentor who has had over 20 years of clinical counseling experience with both men and women. She asserts that many boys are taught to only engage with two emotions: lust and anger. Girls, however, are socialized to engage with a full range of emotions, with the exception of lust and anger. Whether or not you think there is any validity to this claim, consider middle school students’ social experiences. A boy at 11 years old has probably learned that if he communicates being hurt (e.g., “My feelings are hurt”, “I’m physically hurt”, etc.) he risks becoming a target of light joking or more serious harassment. Disguising hurt for some boys literally becomes a survival tactic. The same can be said of girls. How often have we heard a girl get reprimanded for being too aggressive or too candid? That kind of behavior may not be considered “lady like” by some folks. Just food for thought about our comfort with knowing, acknowledging, and becoming comfortable with our emotions… Now, the dads who are contributing to my dissertation all had the opportunity to describe the qualities of a good dad from their perspectives. I do not recall ANY of them describe emotional qualities or talk in emotional terms. None of them said that a good dad "is loving". However, they ALL spoke in action words, which I interpreted as expressions of their love. They said good dads: - Prepare their kids for the future - Avail themselves and spend time with their kids - Demonstrate patience with their kids - Tell their kids they love them - Provide financially and emotionally for their kids - Protect their kids - Pray with and for their kids - Communicate honestly and effectively with their kids A question you might hear between two people who have a strong relationship, but are not being clear about a particular idea might be: “What does that look like?” It basically asks for evidence that demonstrates whatever is needed or requested. For these men, this is what (the emotion, love) “looks like”. I can totally see what love looks like based on their descriptions. They didn’t discuss love in terms of the strong feelings they had for their children, but it was palpable. They talked about it in terms of the action they take every day to demonstrate it. Don’t get me wrong; there is incredible value in our words. It’s no coincidence that many faith traditions place so much significance in words. There is a Biblical passage that basically says that the power of life and death is in our words. The act of confession is powerful. The decision to offer an apology with words can be the difference between a relationship's life or death. But measuring the feelings attached to words becomes so much easier when the objects of our affection SEE love in action. It makes me reflect on poet Khalil Gibran’s transcendent words: Love is work made visible. So, in true hip-hop form, I want to send a shout out to the dads raising special needs kids! Those dads who both SAY AND SHOW how much they love their kids by making that love visible even if their children may not be able to verbally communicate their appreciation. We see you! I’m a creature of habit when it comes to getting my haircut, which means Avery is a creature of habit also. We have two barbers. If one isn’t available we go to the other. If neither is available, we just have to get “fresh” another day. I’m not a big risk-taker when it comes to getting my haircut, and I’m certainly not one when it comes to Avery getting his haircut either. There was a time years ago when Avery could not go the barbershop because of the sensory challenges he experienced as a toddler. The clippers would be too loud, too sharp, too warm or cold. It was pretty painful for him. Thankfully, these days are much easier for Avery, and by extension, for me, too.
There are definitely group norms when it comes to visiting the barbershop. As a customer, you go in and assess how much time you may have to wait for service based on the number of customers present. Or, you may just approach “your” barber to ask how many customers are ahead of you. I imagine the barbers are simultaneously monitoring the number of customers they have and sometimes have to approach first-time customers to determine if they want service, not knowing if those first-timers will accept or decline. Barbershop talk typically means sports. Barbers and customers argue over whose team is better or worse and why. They debate whose team has the most potential and whose is destined for failure no matter what kinds of players are on the roster. Our last visit to the shop was a little different, though. As Avery and I waited for our barber, a group of about 5 men – all of whom had visible intellectual disabilities – came in to the shop. They came in with a female care professional that helped them get situated. Before the men entered, there was a pretty heated basketball debate going on. While I wasn’t directly engaged in the debate, I was definitely listening and appreciating the intensity of the conversation. But the conversation came to a screeching halt when the 5 entered the shop. Uncomfortable is the only word I can use to describe my feeling; my guess is that many of the other customers and some of the barbers did, too. It was crowded, which meant the men would have to wait for haircuts…which meant we all might be here for a while. Some of the men would make comments about random topics to which no one really could respond. I imagine those behaviors were just symptoms of their disabilities. For some of them, their presentation was a little disheveled. And some of us, like me, had to sit next to them. The tone in the barbershop went immediately from a verbal, heated debate to a silence that was louder than the argument that just abruptly ended. I fell right in line with my own body language. With no words, we all said: “Let’s watch TV or our cell phones instead of talking like we were before the 5 arrived.” As I realized what I was doing, I was disappointed. Thankfully, there were some barbers who were a lot more comfortable than me. Two, in particular, stood out. One of the barbers, while inviting one of the 5 into his chair, asked him about a dish he prepared since the last time he visited. As the customer recalled making the dish and how fun it was, a second barber chimed in, “Man, I didn’t know you could make that! You can cook better than me!” Ice OFFICIALLY broken. Everyone in ear shot of that exchange began to laugh. Some of it was probably nervous laughter, but those comments functioned as a connection point...and a relief. I was frustrated with myself because I thought I was more comfortable around people with severe disabilities. My son has a diagnosed developmental disability. My uncle has an intellectual disability. But on this day my stereotypes took the reins and I allowed them to influence how I responded, even if my response was nonverbal. I was also frustrated because of how easy it was for me envision my son in the same situation, potentially. I’m happy that my son has had success in school and in other spaces. But, I’d be lying if I didn’t admit that I spend a lot of time thinking about the supports he may need as an adult. My son might have a care professional take him to the barbershop among his own group of 5. And, his presentation may change the tenor of the space simply by arriving. My prayer is that his reception reflects those two barbers' confidence more than it reflects my silent but loud discomfort. 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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