I can remember when Avery first got his diagnosis and hearing words that might as well been spoken in a foreign language.
IEP. FBA. ABA. EIS. PRISE. IDEA. 504. CST. I & R S. RTI. W – T – H ?! The initial meetings with Avery’s specialists, therapists, teachers, and case managers got on my nerves. The people and the meetings got on my nerves because it seemed like they were usually talking to each other and not to me. My experience gave new meaning and dimension to the concept of the Invisible Man by Ralph Ellison. I felt like an outsider. I felt overlooked. I was frequently annoyed, while simultaneously overwhelmed. I also felt guilty and defensive. I felt guilty because when my son was diagnosed with autism, I was working as a high school counselor. I felt like I should have been much more aware of how complex the experience of walking into a school building, meeting a bunch of specialists (who were like experts in special education), and being handed a 20-something page document REMINDING me of all the areas in which my son was not developing typically. Unfortunately, I was not working as closely with special needs kids where I worked. So in those early meetings, I was just waiting for someone to say, “Mr. Hannon, aren’t you a guidance counselor? I assumed you KNEW more about this process.” Wasn’t too proud of that. And now, I was in the position as the parent of a special needs kid. But, not just the typical parent who comes to these meetings. You see, even when I did rarely attend meetings for special needs kids in my job, I NEVER (ever, ever, ever) saw dads in those meetings. And, honestly, my son’s team of professionals could probably say the same thing when they saw me. Dads were usually likely absent for a number of reasons – from work restrictions to just not having a direct role in their kids’ lives – but I didn’t want that to be my story. My goal was to not let anything stand in the way of my being present and actively contributing to this process, even if my presence represented something new to Avery’s team of professional or for me. Then, there was the language barrier. I was overwhelmed because the folks used language like I was a native speaker. Not so much. I knew that an IEP (Individual Educational Planning) meeting was the meeting when the parents and the team got together to discuss the kid’s progress, goals, and range of services. But, when they started talking about FBAs (functional behavioral analyses) and reports from EIS (early intervention services) to determine what types of interventions provided by the ABA (applied behavioral analysis) therapist would best suit Avery…and then turn and ask me what I thought… *crickets* After noticing my hesitancy, they learned to immediately look to my wife for that kind of feedback. In the moment, that made us ALL more comfortable. But, over time I knew I had homework to do. I would have not just any “say” in what was happening. I wanted to have an “informed say” in this process. When the pace would get too fast at our subsequent meetings, I would work up the courage to stop everyone and say: Um, I don’t know what that means. Would you say that differently or elaborate a bit? Thankfully, over time, I’ve been able to get a better handle on the CST’s (child study team’s) role in helping my son realize his educational potential. And, I’ve become much more aware of PRISE (parental rights in special education) so that I don’t always feel like an outsider who doesn’t know the code of special education. I imagine that many parents and caregivers of special needs children are forced to learn the language of special education. If they don’t, they run the chance of feeling overwhelmed and overlooked in the planning and administration of their child’s educational support services. Counselors and other mental health professionals know that any group has its own set of group norms or values, which are spoken and unspoken. It’s now important to me to help make those norms more transparent, while also shape them to be a little more inclusive. Easy as ABC, right?
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It has always been important for my wife and me to connect our kids to the local community through recreational activities. We were raised that way and have assumed a similar practice as parents. From the time they were each around 4, our kids have participated in organized activities like soccer, softball/T-ball, ballet, karate, choir, and violin. Learning ballet and violin seem to be sticking a bit more with Nile (daughter) than the others, although she still loves singing and other kinds of creative and performing arts. Avery (son) loves it all – he loves competing in sports and academics (unless he loses, of course…that’s an entirely different blog topic) and creative performance (singing, dancing, drumming, etc.).
In our relocation back to South Jersey this past summer, we wanted to be intentional about finding activities that would challenge and support them in healthy ways. We found a ballet studio for Nile fairly easily and she’s resumed playing violin in school. Avery began learning the Korean martial art, Tang Soo Do, last year, while living in Central PA where we found a great instructor who ran a small studio. Wait, can I give a shout out here? (*holding the microphone like a celebrity on the BET awards show*) SHOUT OUT TO VALLALLA’S MARTIAL ARTS ACADEMY IN STATE COLLEGE, PA! Tony was firm, fair, and encouraging to all of the kids when we observed him. We believed his studio and instruction would be a great fit for Avery, and it was. The instructor also has the same spiritual/religious beliefs as we have (Christian), so it was easy to talk to him about our faith and how important it was and is in helping Avery develop his skills, even with a diagnosed disability. In our return home to NJ, I was particularly anxious about finding a martial arts studio that would be similarly good for Avery, which meant a few specific things: 1 - an instructor who would be sensitive to his needs, should he have a meltdown or engage in an activity (e.g., repetitive speech) that other folks may not understand, 2 - an instructor who was more strength-based than deficit-based, or practiced acknowledging and celebrating students’ strengths overwhelmingly more than focusing on where the students may fall short, and 3 - a studio that would not just assume that because Avery seemed to fit in because of his profile as a kid with high functioning autism, that his needs would go overlooked. I know. I’m a choosy beggar. I’m okay with that. At this point in my life, I’d rather ask about accommodations and be told they can’t be met, then not ask at all and never know how accommodating someone is capable of being (I’ll let that sit for a minute). After visiting studios, talking with friends and family and having them pray for our transition, praying with LaChan, and most importantly, TALKING TO AVERY, we found a studio that we believed could meet most, if not all of these preferences. The instructor, who is a great guy, met Avery one day when he and LaChan were visiting without me. He made a comment to LaChan that we hear fairly frequently when folks find out Avery has an autism spectrum disorder: I would have never known he had autism. How did you fix him? *Sigh* I’ve got mixed feelings about a statement like this. On the one hand, I know it’s meant to be a compliment and I’m appreciative. Really, I am. Furreal. On the other hand, though, it implies that something was, well…broken. I’m not too fond of that. It’s kind of like when you come across folks who have low expectations of you so when you meet or exceed those expectations they give you a compliment that highlights their low expectations (e.g., “You speak so well!”). Or, maybe (*I’m about to really be painfully transparent now*), I need to acknowledge that I have been guilty of communicating the same sentiment. I’m guilty of wanting a quick fix, formula, or clean up strategy to eliminate my feelings of insecurity, discomfort, or being judged because of my son’s diagnosis and symptoms. And, for those of us who are members of the larger community of people with disabilities (as caretakers), one of the hardest things to do when finding out about your son’s/daughter’s/sibling’s disability is to confront your OWN FEELINGS, IDEAS, OR STEREOTYPES ABOUT PEOPLE WITH DISABILITIES. *Sigh* So, how did we fix him? We didn’t. We believe in a God that gently reminds us all of how human we are – with all of our strengths and limitations – whether we have a diagnosed disability or not. And, we attribute any measure of success that we experience to Him. We are also continuously learning to be patient, to be flexible, to be honest, and to give and receive constructive criticism. These skills and qualities, I would argue, are critical for my own family’s success, and I’m pretty willing to bet that they apply to any family. So, in the most severe circumstances, like if Avery lost his ability to verbally communicate (which can happen in children on the autism spectrum – the diagnosis is Child Disintegrative Disorder), I have to resolve that he is not, nor was ever broken, and consequently, didn’t need fixing. Because in the loss of one skill, I trust more of his many strengths will emerge even stronger. For the people who know me really well, they KNOW, I’m no “Mr. Fix It”. I’m that guy who helps with home improvement projects, because I’m not handy. My wife is a beast, though. I HATE going to Home Depot with her because the staff members look at me for questions and answers, and I just direct them to her. And while she is an immensely talented teacher and behaviorist, my wife didn’t “clean up” autism’s mess in our family. She modeled the flexibility, patience and honesty we needed to see so that we could confront our own limitations, not Avery’s. I appreciate your reading and welcome any/all comments. Peace, -mike My wife and I had a rude awakening a few weeks ago at our 5th grade daughter’s Parent – Teacher conferences. She does pretty well in school and would probably be considered high-achieving or academically talented based on evidence like grades, standardized tests, and her overall communication skills (e.g., thinking, reading, writing, speaking). In fact, we made a decision this year – and it was a hard one considering our strong public school educator identities – to send her to a private school….and it’s got ALL the bells and whistles. I’m talking REALLY small classes, a strong commitment and follow-through with technology, and an unwavering integration of the arts across the curriculum. With all of those features, we naively made some assumptions about what her early experience in her new school would be. Those assumptions included: a smooth academic transition, social and emotional support that matched her personality and preferences, and teachers who would just KNOW how to best communicate their expectations to her without any misunderstandings.
Man, were we WRONG. DEAD WRONG. As we engaged with each teacher we were generally pleased with most of what we heard. However, as we discussed with one teacher her performance in a subject in which she has to work a little harder, we realized that these folks really didn’t know our girl. In fact, to expect familiarity in just the first 8 weeks of school was simply inappropriate and unfair. Our frustration was a bit misdirected. As my counseling colleagues would say, my wife and I needed to use some “I” statements! What did we realize, you ask? We were reminded that we need to advocate for our typically developing child as much as we need to advocate for our special needs child. We have become really guilty, at times, of establishing a presence (mostly positive, but sometimes a little hostile when necessary) with our son’s school personnel because of some of his vulnerabilities. But, in doing so, we have overlooked our daughter’s vulnerabilities. There is tons of research out there… Better yet, it doesn’t take a researcher to know that sibling relationships are complex and nuanced. Siblings love each other. They surely get on each other’s “last, little, itty, bitty, (black)” nerve. They support each other, fight each other and fight FOR each other. They compete with each other. This experience becomes even more complex when one sibling has a disability. The great research that does exist just confirms, scientifically, what we already know and LIVE: typically developing children who have a siblings with disabilities (depending on the severity), can often feel: - neglected or overlooked at home and in school, especially if both children attend the same school - burdened with additional responsibilities because of their siblings needs or limitations - ashamed/embarrassed of their sibling - protective of their sibling - like they must act as an interpreter for their sibling - angry/resentful toward their sibling with a disability - angry/resentful toward their parent(s) Many of these emotions, arguably, come as a result of the sibling with the disability garnering much of the family’s attention, resources, and interest. They almost become like a sovereign figure within the family. And here we thought we did pretty well when the truth is, this time, we fell a little short. Our experience, education, and this particular experience has told us to make sure we assert ourselves equally with both children – in celebration and in conflict – in their endeavors. And even though one has a disability, any parent of more than one child should be prepared to do the same. Our kids have different needs, different motivators, and different preferences. Those qualities don’t change because one has a particular condition. Now the picture is not all bad for children who have siblings with disabilities. We also know that there are benefits associated with children having siblings with disabilities. These unique group of children have been found to be more empathic and sensitive, have a higher capacity for resilience, possess strong feelings of cohesion within their families, and to communicate great admiration for their siblings with disabilities. Who wouldn’t want to have kids with these qualities? The question for our family (and maybe your family, too) is: How are we fostering these qualities in both of our children? Your reactions and comments are always welcome. Peace, -mike It was around 5th or 6th grade I remember my dad really beginning to talk to me directly about puberty and all the wonderful things associated with it: physical changes, sexual ideas and desires, anxious and awkward interactions with girls to whom I might be attracted, the (forgone) hope that I might grow just a little bit taller, etc. Naturally, the conversations with him were strange at the beginning.
Our ongoing dialogue began on a seemingly random day with my responding to his question, “How was your day?” by telling him that among the day’s other happenings, we talked about sex in my health class and I overheard some kids from class joking about it as I walked home from school (I was rolling solo around that time because I was the new kid in school). In his unique way, he availed himself to me by saying that if I EVER had any questions about sex, feel free to JUST ask him… I never JUST asked him…EVER Thankfully, we found ways to engage about things like relationships – romantic and platonic – and found our rhythm as we both got older and more confident in navigating touchy topics in my house. And here I am now, the father of a 10-year old girl and an 8-year old boy. I’ve tried to avail myself to my daughter by intentionally bringing things up and hopefully stripping away the awkwardness that can come with a pre-adolescent girl talking to her dad about stuff related to puberty. I tell her that they’ll likely be, at some point, some boy or girl who thinks she’s pretty and as a result, act in a really weird way toward her because s/he likes her. They may vie for her attention, seem a bit nosy and overbearing, or be really, really nice. Or, it may happen the other way around. She may find a person really cute and consequently vie for attention, become preoccupied, or just want to spend time with that person. My ongoing act of chivalry with her is to always carry her book bag when I pick her up from school. I’ve tried to communicate that things like offering to carry her book bag (even though she often tells me she can carry it herself) is one way a person can demonstrate their interest in her…beyond the other weird stuff. But what about THE BOY? About two weeks ago, he came home and told his mom (who in turn, told me) that a boy in his class kissed him on the cheek. *Blank stare* A few days later, one of his classmates, who happens to be our neighbor, gave him her phone number. He placed the number on the fridge with a magnet and subsequently told us he planned on going on a date with her. *Blank stare* And thus, my wife and I have to work through the process of not just responding to our boy getting closer to experiencing puberty in a couple of years, but also the notion of helping him discern what may or may not be socially appropriate as he enters these pubescent years and the changes and corresponding feelings associated with it. How did we handle it, you ask? Mom to Avery: “You ain’t going on no dates! The only person you can take on a date is your mom!" But, his mom and I reinforced, that he can tell his male classmate that it’s not polite, or it makes him (well, really us) feel uncomfortable for anyone to kiss, touch, or hug him without permission. Thankfully, this isn’t a new phenomenon for him. Just a few months back he did the same thing to one of his female friends in our old neighborhood. When the girl told her mom (thankfully, she wasn’t offended), the mom told us. At that point we told him that you can’t just kiss people without permission. Children with an autism spectrum disorder (e.g., Asperger’s, PDD-NOS, etc.) can have a hard time taking one skill that they use really well in a specific context (e.g., making sure you say hello to mommy in the morning, but ONLY saying hello to mommy) and generalizing it to broader contexts. Or, the opposite can happen. They can take a skill and apply it EVERYWHERE in EVERY CONTEXT (e.g., breaking out in a Zumba dance ANYWHERE he hears salsa or merengue music). We’re fortunate that our son is verbal, expressive, and a giver and receiver of affection. And, I want him to remain affectionate because it reminds our family of what it feels like to be the object of affection. But, I’m not ready for him to share that affection with everybody, even if they want to kiss him or he wants to date them. At least not now. Reactions, opinions, and constructive feedback are always welcome and appreciated. 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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