Tag Archives: Autism

New (Year) Insights

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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/fiancé 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

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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

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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

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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.