It Takes a Village

Who is helping you raise your child?

There are many people that are helping my husband and I raise our kids–family, friends, babysitters, caregivers, teachers, doctors–I refer to this folks as part of our village. Each member plays a critical role in the care, nurturing, mentoring, tending to, and shaping of my boys.

My youngest son’s recent distress required we revisit resources available to him. My son’s village will likely have some new members in the near future. ūüėä We’re also now having to rethink environments in which will help him thrive academically and emotionally in the future. The previous known path now isn’t so clear. This lack of clarity is causing me discomfort I haven’t felt this intensely in a while. I’m concerned about doing right by my son and making the right decisions for what’s best for him. It does give me comfort to know I have a village I can turn to for guidance, information, encouragement and support.

How is part of your child’s village?

The Power of You

What makes you or your child unique?

My youngest son and I were discussing the power of self-awareness, advocacy and accepting (even embracing) who you are. Only allow others to treat you how you want to be treated. Don’t think because you have autism that you are any less valuable or that people should treat you any other way than kind and respectful. My son and I talked about the power everyone possesses when they know who they are, and share it with others.

In our world, us neurotypicals (NTs) — not on the autism spectrum — spend much of our life trying to ‘fit it’ in whatever form that takes. Part of what my son benefits from in being on the autism spectrum is that he is unaware of the social norms and pressures peers try to place on each other. He is who he is, and when a peer tries to place a pressure on him, he either ignores it or is confused by it (which typically leads to a discussion at home as to why something happened or why someone acted the way that they did). An example, my son was friends with a girl and liked her for who she was. He wasn’t concerned that she was overweight or that she was a bit ‘louder’ than her peers. He thought she was funny and kind and she seemed very much to like him for him. One of his classmates decided to ‘target’ my son and his friend making a heart shape with his hands and continuing to do so after they had asked him to stop. My son said, “I don’t understand why he was making the heart shape. He acted like I was supposed to be mad about it, but it just really annoyed me. He wouldn’t stop doing it.” I took a guess at what might be going on, “Relationships make many people, particularly us neurotypicals, uncomfortable, and when we see people showing an interest in each other easily, without effort, it can evoke emotions in us — discomfort — either we’re jealous because we like that person and are embarrassed we didn’t act sooner, or we feel pressure to be in a relationship and don’t know how to go about it, or we feel there’s something wrong with who you like and even though that’s that person’s issue they try to put their discomfort on us.” He thought about it for a minute and said, “Well, it still annoyed me.” To which I responded, “Next time, tell them it annoys you. Ask them why they are directing their discomfort at you? I bet anything it will stop them in their tracks, because they likely don’t even realize that’s what they are doing.” This seemed to satisfy my son for the time being.

Being yourself isn’t always easy. Especially when you are young and you get messages from TV, the Internet, movies and peers about how you are ‘supposed’ to act. If you don’t have someone telling you you’re better off just being yourself (and that oh, by the way, most people will find it refreshing and even attractive) you can easily form opinions about how you should act and not be yourself. I’d hate to have that happen to either of my sons, I’m glad my youngest is challenged in being anything other than himself. He’s an inspiration to his brother, my husband and I, his teachers and many of his peers.

How is your child unique? And how are you helping them embrace who they are?

I will be off the next few weeks with Easter and then Spring Break, but will return later in April.

You’re a Good Friend

How many good friends do you have?

My youngest son and I continue to read our new favorite book, The Asperkid’s Secret Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome¬†by Jennifer Cooke O’Toole. What I love about this book is how much of this information benefits people on the spectrum and those of us who aren’t.

My son and I are now in the part of the book that is about friendship — what makes a good friend and how to go about cultivating a friendship. As I read the chapter I was struck by how much I would have benefitted from someone telling me this information¬†when I was my son’s age about what makes a good friend. When I was young, I didn’t think about friendships in layers per se, but did understand I had different friends — some were kind, some were kind when they felt like it, some could be trusted, others couldn’t, etc. In the book, it spells out characteristics a good friend has. Some of the basics: Smiles when they see you, likes some of the same things you do, shares some of the same opinions, invites you to hang out. And others that are more advanced and truly define a good friend: stands up for you (even if you’re not there), stops you if you put yourself down, listens, sees talents in you that you hadn’t noticed, likes you for exactly who you are. There are many more characteristics she names, but you get the picture, she is shining a light on what a true and worthwhile friend is.

After reading this I reflected on my own childhood friends. I had some friends that had some of these characteristics, but don’t think I had any ‘true’ friends until I was college-age. As I’ve grown older, I’ve sought out, cared for and worked to develop¬†healthy and meaningful¬†friendships vs. giving equal care and time¬†across all friends regardless to what they bring to the relationship. I wondered how I might have invested my time differently¬†with people earlier in life if I had had this information. I thought what the author said was so valuable I grabbed my older son and said, “I need to read this to you.” He has friends much like I did in middle school — some are nice, some are nice when they feel like, some can be trusted, and others cannot. After reading with both my boys I felt like I had given them a path to know how to spot a good friend and better spend their time with people who will value them and their friendship and reciprocate in kind.

Friendship can be a tricky thing to navigate, especially if you don’t understand what a good friend ‘looks’ like. I’m grateful I’ve had an opportunity to enlighten my kids (and remind myself) about what a good friend truly is.

How are you teaching your child to spot (and make) a good friend?

Learning Together

What are you teaching your child?

As a parent, I’ve always felt my role is mainly comprised of two things: to teach my children things (how life works, how to be a good citizen, how to prosper, etc.) and to keep them safe. I’ve been keenly aware since becoming a parent, that while¬†my¬†husband and I are¬†doing most of¬†the teaching (in addition to their formal education and instructors),¬†we’re also learning from each child–each is different, has varying needs and ways in which they learn–so¬†we can help them thrive.

My husband and I became increasingly aware that we were going to need to increase our knowledge of kids on the autism spectrum after our youngest was diagnosed. He has always done well academically, but struggled socially. He has a happy disposition, and people generally like him, but he is challenged with making meaningful and¬†lasting connections. In doing some research I came across a book, The Asperkid’s Secret Book of Social Rules — The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome by Jennifer Cook O’Toole. My son and I started reading it together.¬†For me, it¬†was like shining a light in a dark space. I started to understand the true challenges my son faces and why. For the first time, I started to get a much better understanding of how my son’s brain works. I wasn’t the only one who was learning. My son started to get a much better picture of what we’ve been trying to teach him and why.

The book references those that are¬†high-functioning as Aspie’s, and those that are not on the spectrum as Neuro-typical (NT). Oh, how I love that difference. It provides an alternative to speaking of behaviors in terms other than normal and abnormal. My son is a pretty normal kid with the exception that his brain is wired to think and process information differently. My son and I have been learning together. We are having ‘aha’ moments where we are understanding each other and social¬†situations described in the book more clearly. My son even had a moment of self-reflection where he realized how he’d handled a situation as an “Aspie” vs. a “NT”, and how he might handle the same situation differently¬†in the future.

While I have always prided myself on being a good teacher to my child, I’m finding more satisfaction¬†learning together. I need to learn more. Learning together now, while I can still help my child as he grows,¬†feels like winning the lottery. Thank you to Jennifer for this book. For the light bulb moment, and more that will come. Not just for my family, but hopefully for many others.

What are you teaching your child? How are you learning from or with your child to help them as they grow?

New (Year) Insights

Do you have a resolution for the New Year?

I am continuing to become smarter about my youngest son who has high functioning autism (better known as Asperger’s syndrome) and plan to continue to do so in the New Year. I don’t know that I would call it a resolution per se, but¬†I feel like I’m an ostrich pulling my head out of the sand finally. I think talking more openly about my son being on the spectrum has empowered me to be more open, proactive, and grateful for the information I am coming across — lectures, videos, books — I am not alone in trying to educated myself and am thankful so many others are doing such great work in this space.

One of my son’s spectrum traits¬†comes across in¬†his passion for geography. He is not just interested in geography but fixated on it. He can name practically every country in the world, tell you little known facts and provide insights into the country’s flag, population and more. In his mind, he has already mapped out his future (literally and figuratively). He has had a friend/fianc√© since he was 7 and decided¬†when his¬†friend got engaged that they would live in NYC when they get married at 25 (it still makes me smile to think that they came up with that all on their own at such a young age).¬†Since then, his love (fixation) on geography has grown and he has become borderline obsessed with moving to Australia. To a small¬†remote town on the east coast of the country.¬†My husband and I are not sure how he found the¬†city exactly (we’ve never been there), but he didn’t pick it willy nilly. He clearly put some thought into it and has big ideas for this town — he’ll be a teacher, or¬†he’ll build a new building, or maybe be the mayor.¬†At the end of the day, he sees himself positively impacting this town. That’s hard to argue with, however, I had to get my son to think about his girlfriend. He knows he wants to go to this town and live there someday, but what about her. Would she?

“What if she gets a job somewhere else?” I asked him, “Or doesn’t want to live there? What will you do then?” He got sad. He cried and I was sad I’d upset him, but I wanted to make sure he understood in any relationship both people have a say, and where you live is an important decision you have to make together. After he had somewhat calmed down he started saying, “I’m a bad person. I’m a bad person.” This worried me. Why was he saying this? I asked him to talk to me and explain what he was saying. “I just realized that I don’t give her enough of my time,” he said. “Your girlfriend?” I asked. “Yes. The way my mind works, I have these thoughts and I really like thinking my thoughts. And there isn’t a lot of room for me to think about other peoples thoughts. And it’s not because I don’t want to, it’s because my mind really, really, really wants to think about what it wants to think about. Like moving to Australia. I can’t imagine not moving there but I hadn’t thought about her not wanting to move there too, and that makes me a bad person.” Before I could respond he continued, “It’s like if you think of my mind like a pie. I want to think about what I want to think about 95% of the time. That only leaves 5% for other people.” He paused then continued on, “That’s the problem with having friends. I want to have friends, but my mind doesn’t have space for them.” Whoa, I thought, I just got some very valuable insights into my son. I was blown away by his self-awareness and his ability to articulate the way he sees his mind working. I told him as much then I tried to get him to rethink how he could broach the subject with his friend, who happens to be visiting Australia presently. “Why don’t you ask her what she thought of the country? See what you can learn from her about it, and see if she might be interested in living there one day,” I suggested. “And you’re not going to live there for quite a while, you never know where life will take you. Maybe you’ll get a chance to visit there, or maybe even go to school there.” My son seemed to perk up as the conversation went along, “Yes!” he said, “maybe I can visit or spend some time there and check it out. And maybe she can come visit and then we can decide from there.” I loved that he was figuring out how this could potentially work.

My son continues to surprise me. I have thought my son’s relationship with this girl would have ended a while ago, but it’s continued to go on three + years. I know the likelihood that they’ll end up married and living in this remote Australian city is slim, but I love how big my son is dreaming. I love that he is better understanding himself and is willing to share how his mind works, and is open (at least starting to be) that he may have to build some new muscles if he wants to keep this relationship and have it grow.

I look forward to the New Year and the insights I will gain.

What do you hope to gain in the New Year?

Falling in Love — Don’t Go Changing

Who was your first crush? How did you let them know you liked them? Were you yourself, or did you change yourself to try to be what you thought they’d want you to be?

My youngest is learning about love. He has had a girlfriend for several years. He adores her, and has already planned out their future life (where they’ll live, the number of kids they’ll have and their names). But, he has a new friend at school who insists she loves him. She’s new to his class and sits next to him.

With my youngest being on the autism spectrum, he struggles with social cues. Picking up on others non-verbal communication (facial expression, body stance, proximity, etc.) and sometimes struggles with their meaning. He often takes others very literally, but in the case of this young woman, he is confused when she says “I love you.”

I recently went to my son’s school to see him participate in a fundraiser (Walk-a-thon). His classmate was there and he introduced me. She said “Seriously?” with a nervous giggle. And when my son confirmed I was indeed his mom she said, “Well, please don’t take him away from me because I really like talking to him.” I was a little confused by this statement because there was no discussion prior around anyone taking anyone else away.¬† After watching my son with her for a little while I started to understand why this girl had feelings for my son.

My son doesn’t have many friends. He is a very lovable kid, but not understanding social cues has made it difficult for him to truly bond with others. This girl likes my son as he is. She doesn’t expect him to act a certain way, or want him to change. My son only knows how to be himself. He likes talking to this girl. He likes that she likes him as he is. He is excited by the prospect of having a friend. What I picked up at the Walk-a-thon was that my son is showing this girl attention she isn’t used to, he accepts her as she is, and isn’t looking for her to change. I know if I ever came across a boy who had so easily accepted me as I was at their age, I probably would have liked him too.

Now my son is dealing with a girl who doesn’t understand the way my son’s mind works, and mistakes his interest in having a friend, as him being interested in her as more than a friend. She recently wrote him a letter that he brought home. It read something to the effect of, “Are you mad at me? I hope not, because I love you and I miss talking to you. Please don’t break my heart.” It broke my heart reading it. She is so courageous to be so open and sure about her feelings. My son doesn’t love her. My son does like having a friend, and thinks this girl is nice. I’m not sure how she will understand that. My son has tried telling her, “I just want to be friends” after getting some coaching from my husband and his older brother, but she seems to be holding out hope that he will change his mind.

As a young person, I would have been crushed if I had had the guts to tell a boy I liked him and then he rejected me (telling me he just wanted to be friends would have felt like a rejection). When I was their age, I didn’t have the guts. I am aware of how we form opinions of who we are and what we have to offer the world early in life. When we don’t feel like we are accepted or our affections reciprocated it allows the seed of “I’m not good enough” to take hold. I don’t want my son’s friend to not feel she’s good enough. I’m not sure my son could or would handle it differently if he didn’t have the challenges that come with being on the spectrum. Maybe he would have not be so open to being friends with her, maybe he would have been more conscientious about how he was behaving around her or other girls. I’d rather him be who is as he is. Not getting caught up in ‘appearances’ — what you look like, who you’re friends with, what activities you’re into, where you live, etc. — is refreshing. People like this are rare. I get why this young person loves my son. I only hope that she can accept he likes her as she is, and she can like herself that way too.

How have you stayed true to who you are in relationship? How are you helping your child avoid the “I’m not good enough” seed from starting to grow?

Getting to Know You

How well do you know your child?

As a parent, I’d like to think I know my kids pretty well, but¬†my assessment was recently put¬†into question.¬†As I’ve shared, my youngest son is on the autism spectrum. After meeting with a specialist,¬†my husband and I were¬†provided with suggested readings to help us better understand Autism Spectrum Disorder (ASD). There were several books that were recommended, along with a workbook. I ordered all the material in hopes that¬†they would be useful. Some were intended for my son. Some were intended for my husband and I (and my son’s teachers). I wasn’t sure how my son would react when I showed him the material. Would he be upset? Or relieved? Or something else?

When the first couple of books came, I showed them to him. Because my son’s biggest challenge is picking up on social cues, we started with You are a Social Detective! Explaining Social Thinking to Kids by Michelle Garcia Winner and Pamela Crooke. My son and I read through the book. It was very insightful, but I wasn’t sure how much he really was following and retaining. It’s a great reference book that we’ll need to read and re-read to ensure it sinks in.¬†The next book I shared with him¬†was Different Like Me: My Book of Autism Heroes by Jennifer Elder. My son really liked this book. “Wow! Sir Isaac Newton had autism? Albert Einstein?” he said. You could tell he felt that instead of being deficient for being on the spectrum he was in elite company with some of history’s most famous people. Then we came upon Asperger’s…What Does It Mean to Me? A workbook explaining self-awareness and life lessons to the child or youth with high functioning autism or Asperger’s by Catherine Faherty. This book was a godsend. My son and I started reading the workbook together. It walks through different topics explaining how children on the autism spectrum may think, feel or look at situations differently than someone who is not. Then it asks the child to self-assess and answer what is true from them. Talk about getting to know your child. My son started having lightbulb moments–understanding how others without autism may experience something versus how he does–he was gaining clarity around his autism and so were my husband and I. As we read through the workbook together,¬†our son¬†learned more about himself, my husband and I learned more about ASD, and more about our son and how he experiences the world. It was (and is)¬†priceless. Assumptions we had made were dispelled¬†and unknowns¬†were¬†replaced with information¬†about our son. After completing the workbook I believe I understand my son and ASD much better. It was so insightful, we talked to our son and asked if he would be willing to share the workbook with his teachers and staff who work with him so they can better understand him as well. He agreed. “What about grandma and grandpa? Or your aunts and uncles? Can we share it with them?” I asked. “Sure!,” he said. I loved his enthusiasm and willingness to share with those who love and care about him.

We are excited about finding this workbook and the other wonderful material that is helping us better understand¬†our son. There is no greater feeling, in my opinion, then having knowledge to help you navigate life. It’s challenging enough. Having this information feels like blinders have been lifted and we can better take on this new(er) terrain.

How well do you know your child? What material (book, course, etc.) have you come across that has helped you better understand them?

Into the Wilderness

Anyone like exploring new territory?

I love finding parallels in life and parenting. Hiking into new terrain is much like parenting — there is always a new path or trail — sometimes the view is beautiful, sometimes it¬†is challenging; you can feel safe and confident and other times lost and scared — what are you supposed to do next? The more you hike, the more prepared you feel to handle the unexpected. Much like parenting. Though you can still be caught off guard from time to time when you face something new, regardless of your preparation or past experience.

We will be doing some hiking this summer, and while I’m looking forward to spending time with my kids, I stepping into the wilderness in a more parental way. Our son has autism. He is high functioning but exhibits some tell-tale signs that he is on the spectrum: arms flapping when he’s interested in something or he gets excited (often paired with a humming sound); and struggling with picking up on some social cues. We have known this for several years, and have enlisted the help of several professionals to help us and him. With that said, my husband and I hadn’t shared our son’s diagnosis with him, nor spoke about it openly (outside of talking with teachers, counselors and other professionals) until now. My reluctance to talk about it openly was not because I was¬†embarrassed or ashamed, but because I didn’t want¬†a label attached to him–I didn’t want people to think of him as being ‘different’ or less than (because he isn’t). I didn’t want it to define him — what he’s capable of and who he is and will be.¬†I¬†convinced myself that by keeping quiet I¬†was protecting him and, if I’m being completely honest, also protecting myself — somehow I felt like his diagnosis was a failure on my part (yes, I realize that is not rational). I didn’t want to have to discuss the situation with family or friends. I didn’t want to shine a spotlight on it.¬†In talking with an therapist she told me it was time to embrace the diagnosis, let my son in on what he was dealing with so he understood his¬†own behavior and why it was different.¬†¬†I am¬†the adult in the situation and have grown a thicker skin. And while I may be concerned that sharing this could draw judgment, or pity; I know that those that love my son and¬†our family¬†will be supportive and caring. My son needed to know, and I needed to get over my fears.

We sat our son done and explained his diagnosis. “Being on the spectrum simply means your brain works differently than others. You have advantages that others don’t because you are on the autism spectrum. And you have disadvantages,” we told him. We shared examples of where he is advanced (academics, conversations with adults and younger children) and where he¬†is challenged¬†(building relationships with his peers/friendship; controlling how he expresses interest/excitement). We sat our older son down and explained to him what was going on as well. We thought it was important he understand what his brother was dealing with, and why his brother does what he does. “His brain is wired this way,” we told him. “If someone asks you why your brother is acting weird/strange/differently, you say, “that’s just my brother being my brother” and leave it at that.”

I’m grateful for organizations like Autism Speaks. And the awareness that is being brought by parents and the medical field on this topic. Yet this still feels very unfamiliar to me. It’s almost as though I’ve been studying a map for a while, and I’ve decided to start on my journey through unchartered territory. I am going into the wilderness. Its new. Its scary. I think I’m prepared, but am I? Will I encounter something new I’m not prepared for?¬† I know I’m going to make mistakes. I know I am going to learn. I am praying I do right by my son and our family.

How do you navigate unfamiliar territory? How do you handle talking about uncomfortable topics?

I will be taking a few weeks off to enjoy the summer with family and will be back in August.