Mood Swings, Teenage Years and Autsism: 'Nuf said

Autism, puberty and mood swings. 'nuf said. I think I'm afraid of these 3 words when they are in the same sentence cause I'm there right now and IT IS A REAL CHALLENGE. We don't have a lot of bad days but when we do, it's a real bad day. Today was one of those days. Yet, we managed to hang in there, from morning 'till evening. We went to church which was fine, came back home but the minute I asked him to move from one spot because I needed him to, it started. I think that was a major temper tantrum. I could see a bit of the teenage defiance in him, the way I had it when I was a teenager so yes, some of the behavior was definitely teenage-hormone-mood-swings induced but, the impulsiveness going hot then, cold then, hot again, that was autism. Cause I remember staying mad at my dad for days when I was a teen. My son threw a fit, complete with door slamming and everything (I took away his phone) but within a half hour, he was fine. A few hours later, he was back at it, this time because I told him he had to study for his test tomorrow. The difference between a neuro-typical teenager and an autistic teenager is that the neuro-typical teenager will not show his bad mood to complete strangers. My son did. I wanted all of us, my husband, my son and I to go to the Christmas concert the church has every year; it was tonight. We do this every year, you know to get into the spirit of Christmas but really, I started looking for things to do to create memories for my kid, to give him tangible experiences so he could have a better grasp on customs and traditions that surround different holidays. So we usually find things things to do around our community on those special holidays like Christmas and Independence day. Friday, we did a Light show. It was free and he really enjoyed it. He usually likes attending the concert, too but he was in too much of a mood to really get into it this time. When we walked into the church for the Christmas concert tonight and someone greeted him by name, he humphed, turned his face and did not reply. He was in such a funky mood, he could not even get himself together to say hi back and he was pretty much in that fine mood throughout the Christmas concert. Cyril had not humphed at strangers since maybe 1st or 2nd grade. So he was pretty p'ed. Yes. I did take his phone and also asked him to study but I had no idea I was declaring open season on my patience when I did. I came across this article once everything was back to normal. Here's the link: http://raisingchildren.net.au/articles/autism_spectrum_disorder_mood_changes_teenagers.html. I read it and it actually made me feel better because it made me understand what was happening to my kid during his temper tantrums, reminded me of the challenge he has trying to control his emotions because of his condition. These are the tools I need, the tools I use, the tools I turn to when I find myself at a loss or feel frustrated. I go looking for answers from the people who I think may know more, may know better, the experts, the practitioners, the researchers. Thank God for them and the work they do.
So today was hard but, those hard days are also part of parenting and if there's one thing I love more than anything, it's being this autistic teenager's mom. I'm not going to lie to you. My patience was wearing thin, like real thin tonight and I guess, like many parents dealing with the teenage years of their children, I had a headache but parenting in general is not easy. It's just not. It's a labor of love. Same goes for parents of special needs children. It's a labor of love for all of us. #truth.

A Seat at the Table

Where is my space? My place at the table to be part of the conversation? I come from a culture where autism is not openly discussed, grew up in a society where children with special needs were kept hidden from view and I'm approaching my life as the mother of a child with special needs with this background, the memories of these experiences. But I grew up, got wiser, fought to inform myself and decided I wanted to be more open, more forthcoming about what life is like for me as a mother of Haitian descent raising her son with autism. Yes, some of the struggles I face are similar to that of other parents caring for their child with autism but, in many ways, I confront an additional layer of challenges brought on by a lack of support and understanding of what life is like for special needs individuals and their families in the Haitian-American community. I am here trying to reconcile the then and the now and it's not really easy. I don't think people can really understand what I'm talking about unless they, too are dealing with the same issue. For me to find support, support as the mother of a child with autism, I have to go beyond my immediate circle of friends and family. I have to look to community-based support groups, attend meetings organized by autism-focused organizations or others. That's what I've had to do since I started looking for ways to help my son. It's not that those in your circles don't love you or your kid. They do. I know they do. It's just that sometimes, they don't really know what to say, what to do. I can't blame them for that. They are trying their best. I do appreciate all the different articles I receive in my inbox via email, private message, sometimes even in person. They may not understand the best way to help but they know that information and resources are essential tools. I am grateful anytime anyone calls my attention to articles, activities or organizations they think may be helpful. But... But it doesn't go far enough. It doesn't create this space where I feel understood precisely because of the different layers brought on by my culture and I'm not just talking about my own circles there. I'm also referring to those support groups I've gone to, the meetings I've attended. While they address some of the general struggles I face because they are fairly common in almost all families with autistic kids, they do not consider my personal story, some of the questions I may have because I wasn't used to some behaviors, wasn't exposed to them growing up. That's why I want a seat at the table; I want to add my voice to the conversation about autism from the perspective of a Haitian-American woman, who maybe cooks with different spices and, maybe handles some things a little differently at home. Whose beliefs and cultural background shape the way she approaches child-rearing, therapy and medical interventions. Whose child might be missing on some opportunities for lack of parental knowledge, although he is involved in sports and some other activities out of school. Of course, there are similarities between my experience and that of other parents raising their kids with autism. I know that most if not all parents, have had to fight for services for their child in the public school system, have had to pray for patience and call on the love they have for their child as he/she goes through a meltdown, have had to accommodate for special foods and singular interests. There are also differences, real differences that stem, not just from the uniqueness of each child, from the very individualistic way autism manifest itself but, from those cultural nuances I mentioned above. This is a part of my reality and it can complicate things further, can make it just a little harder to explain some of the challenges I face. And that's why I decided to go public with my experience raising a child with autism. I seek support. I hope to establish a connection with other parents of children with special needs, with autism, to increase awareness, knowledge, understanding, acceptance. I hope to continue my quest for information. I want to find my tribe but first, I want a seat at the table. I want to be part of the conversation.

Raising C.: Autism Awareness Month Started

Raising C.: Autism Awareness Month Started: I know it's been a few months since my last blog entry but I had a lot going on. I had a full load of classes to complete by March 5th ...

Autism Awareness Month Started

I know it's been a few months since my last blog entry but I had a lot going on. I had a full load of classes to complete by March 5th and they were a lot of work. Somehow, I always find myself having to take one class or another either for work or, as part of my doctoral studies. This time, it was for work but just because I'm not blogging doesn't mean I'm not thinking about blogging or things I should be, could be blogging about. My mind never stops or maybe it does a little when I sleep but yes, I'm always thinking of one thing or another. And guess what's been on my mind lately? Yep, autism. Actually, autism is always on my mind but let's leave that for another day and go back to the topic at hand now.
April is Autism Awareness month. To that effect, I posted some thoughts on the topic and shared some information about what autism is like in my house on social media. If you go to my Facebook author's page, Rebecca N Carmant author, or my IG feed under the same name, you can see a series of posts that I started posting on March 30th. This is the second year I'm doing this, that I'm opening the door into my private life, if only a little, to help people understand what exactly autism means for the people and families who are living with it.
If that one day, April 2nd and, that one month, April can bring more awareness, understanding and acceptance of a condition that affects so many of us, across all types of barriers and walks of life, I'll do my part. I'll show and share what it's like in our family.

I will now share these posts on this blog as well because it's important. As prevalent as autism is, it is still not getting the positive support that people think it does.  That's why parents like me are out there talking about it, to raise awareness and promote acceptance of individuals with the condition.

 

 

Raising C.: The ambivalence that is autism and why it breaks m...

Raising C.: The ambivalence that is autism and why it breaks m...: Today I watched as my son struggled to adjust to society's expectations. He is cognitively there, where he understands judgment; he u...

The ambivalence that is autism and why it breaks my heart to watch my son struggle through it

Today I watched as my son struggled to adjust to society's expectations. He is cognitively there, where he understands judgment; he understands expectations and now that he is becoming a teenager, getting older, he's trying so hard to repress that part of him that still wants to be a little kid. He tries to deny himself the simple pleasure of watching a show or a movie that he should have already outgrown but hasn't yet. He has outgrown some younger kids' shows. He can now enjoy a regular movie, the type usually favored by older kids but he still likes to watch the little kids' shows, not all of them but quite a few of them. And it's hard to watch my boy go through all of this. Do I tell him "just watch it" but explain that kids his age are not usually into these kinds of shows or movies anymore? Do I just let him be? Do I stop him? I never stop him. I try to prepare him because he is aware. He knows what's trendy and "in". He knows how to "appear" interested in what his peers are following but, when he's around family, he goes back and forth between different types of shows. In other areas, he is hitting major emotional and developmental milestones. As early as 5th grade, he started expressing curiosity for dating and girls. He's been talking a lot about how we would treat a girl on a date (like a gentleman, he says) so there are areas where he is more or less aligned with same-age peers, at least cognitively. His speech and language impediments are significant hurdles to actually developing friendships but he is showing a natural desire for closer relationships. 

If life was not so scripted and judgments so harsh, I would not have to worry about this at all, about the fact that my son enjoys watching shows intended for a younger audience. There's no harm in wanting to do something that is better suited for younger kids but life is not that way, is it? I like to watch kids' shows. I like to read kids books but I guess I've already demonstrated my "normalness" if that's even a word so really, I have nothing to prove. I grew up hitting all the milestones and such on time, did not suffer from delays, was not diagnosed with Pervasive Development Disorder (now merged into autism label; they don't separate them anymore) so I'm judged differently. It's not the same for my son. He is constantly being evaluated, constantly being assessed and I have to keep that in mind. I have to remember what I'm being told by different groups of people and, I have to do what's best for him, not just what's best for him now but what's best for his future. I have to keep peeling the different layers of his character to find out how much to do, how often, how far to go, how to plan.

This is not a joke. And it's complicated. Sometimes I don't know what the correct answer is, don't really know whether I should push to "normalize" him at the expense of his true self. I want my kid to be happy. I want to be his mom, love him and help him. But I don't really want to deny him the things that make him smile. So I think I'm going to try explaining the rules we live by out there in the world, so that he understands the reactions he gets from people: the surprised look, the puzzled frown, the pitiful or intrigued scare. He's experienced them all. But I want him to be himself. I want him to accept himself, be comfortable in his own skin, have self-confidence. How can you love yourself if you are repressing parts of yourself? There has to be a better way. I want him to understand the rules enough to survive this world but have the space to be himself.

And that's how I'm dealing right now. I love my kid and I hated what I saw today: How he pretended not to like a movie because it was geared towards a younger audience but ended up rocking to the music when the final credits rolled. He hid his face, asked to go home but still watched it. Maybe he really didn't like it and oh! that's a good thing some will say. He's moving beyond that now. I should be celebrating but today, I got to live the ambivalence that is autism in s very direct, personal way and my heart literally ached for my kid. Literally. That's why I took the pictures showing him trying to refrain from smiling and finally giving in to smiling and moving to the music... At the very end, when the credits were rolling.

How Asperger's Works