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

Becoming the Mother He Needs Me To Be

People who meet me as a parent are always surprised at my tenacity.  When I react to something that I don't agree with, or decide on a course of actions, they act like "Whoa, where did that come from?" But why?  I'm just one of millions of parents who do what needs to be done every day for their kids.  What's so surprising about that?  But if they knew me, knew my story, maybe they would understand.  I'm the girl who refused to listen when the priest came to the chapel where I was praying that fateful night the hospital called us my husband and I, to say that it didn't look like our son was going to make it. He was trying to tell me that I needed to accept God's will but I refused to listen to him and instead, turned directly to the altar and kept praying. I was determined to fight for my kid and although, it looked like the the end was near, I didn't just sit around and waited for it to come.  I didn't want my son to die and my faith taught me that, when it looks like all is lost, you call God.  I wasn't going to accept this diagnosis without a fight.  I still remember how I felt that night and what I was thinking. "As long as my son is still breathing, I'm going to keep praying and keep asking God to spare his life". And boy did I pray!!! I prayed hard! I prayed completely inhibited because I was desperate. I knew this was a desperate situation. I had already been told but I loved my baby and wanted nothing more than to see him live.  This moment was like walking through a ring of fire. In my mind, I was saying "it ain't over until it's actually over.  No matter what the doctors and nurses said, as long as my baby is still breathing, it's not over so I'm going to keep on praying and crying and begging God for my son to live until there's no more reason to pray!" Thank God, I didn't need to get to that point. My son made it through that night ( I really hate thinking about that night). I can't even get past that moment to work on my next book but that's another story for another post.  Let's get back to this one.  So when people are surprised at my tenacity, at how hard I fight for my son, they should understand one thing:  I'm not going to give up.  I'm going to keep fighting for him, for his well-being, for his chance at independence and at living a good life. They need to understand what I went through and where I'm coming from to truly understand how I became the mother, the woman I am today and, why I don't just accept platitudes and excuses.  I'm the girl who doesn't back down, the girl who doesn't stop trying, doesn't stop fighting to get her son what she feels he needs to get better, to move ahead. I will always choose to fight until there's no more reason to fight, but until then, fight I will. My son has taught me to be persistent, to be bold and to seek answers. He needed me to become that mother. I didn't see it right away but it got clearer as time went on.  So now, when I have something to take care of, especially when it comes to my kid, I don't give up. If people try to write him off, to portray him as something he's not, as less than he is simply because they don't understand his needs, or sadly, because they do not want to take the time to get to know him, do not want to really help him, I speak up. I do not accept preconceived ideas and judgmental attitudes and I can smell them a mile away.  I'm the girl who makes phone calls, seeks information, researches the problem.  I talk to people, voice my concerns, ask questions and ask for help, too.  I don't always get what I want, what I hope for but it doesn't cross my mind one minute not to to try.  If one thing doesn't pan out, I try another. If one person doesn't listen or doesn't help, I keep trying, keep looking until I find someone who will listen because I've learned to do that: Not to give up until there's no other choice but to give in. I didn't think I had it in me. But apparently I do. By the grace of God, I do. 

Guess Who's a Teenager Now and... Guess what He Did That Made Me So Proud?

March is a busy month in our family, a month where the two main men in my life celebrate their birthdays, 10 days apart from each other. First comes my son, then my husband.  Life's been so full of activities, deadlines and unplanned emergencies that I didn't even get a chance to blog about my boy's special day. But it was quite special.  To celebrate becoming a teenager, he spent his birthday at one of those arcades places. so popular with teenagers and, bonus for mom and dad, it had a restaurant right there on the premises. All you had to do was walk from the arcade into the restaurant without ever having to step outside and so, that's what we did.  C's cousins and a friend helped him welcome his teenage years by blowing tickets on games, claiming prizes and eating lunch.  The cool thing was: They had their own tables. Of course, hubby and I were not too far; in fact we were sitting right across from them but, the server went over to their table and took their orders, even if he had to check with us for confirmation because, after all, we were the ones footing the bill. :-)  I was so proud of my boy.  Guess what he did? He asked for chocolate. But that's not what floored me. What floored me was that when the waiter did bring it, C sent it back clearly stating "I asked for cold chocolate." He sent it back guys! All by himself!!! He communicated his needs and clarified his order. How about that?!! Not bad for a language impaired 13 year-old, for a child who only started vocalizing just a few months shy of his 5th birthday.  When I think of my boy during the first few years of his life, of all he had to overcome to get to where he is today... Is it any wonder that I'm willing to fight so hard for him. He deserves a fighting chance, a chance to try and live the best life and, that's why we do all we do for him, his dad and I.  We know autism is a challenge. We know his medical issues are a challenge but with every day, every month, every year that passes, he proves to us over and over again that our efforts are not in vain. Case in point was that beautiful moment that we got to witness.  Our son expressing himself and communicating his needs gruff voice, unclear articulation and all.

The experience itself wasn't exactly perfect; C couldn't actually eat the grilled cheese sandwich he had ordered because of his sensory issues. He had a hard time chewing; wanted to spit out the food and had to be reminded that he was in public and therefore, had to show good table manners but, that? That moment when he sent the waiter back with the hot chocolate with no hesitation, no pause? That was awesome!!!!!!!!!!!!!! I wanted to get up and dance, shout even but people would have probably thought I was losing it so I sat there quietly, proudly looking on as my son asserted himself without my help. He doesn't know it but that was the best gift he could have given me that day.   So proud of him!!! Happy 13th Birthday to my Teenager!!!!

Reading resource for hyperlexia and autism

C's speech and language therapist recently started using a new program to help improve his reading comprehension.  She did some research and found something a little different, something I had not heard of before. I was doing some research myself and had come across some things but not the one she just got. So here's a picture of the cover:

She's very enthusiastic about it and said he was doing really well with it. She's only had it for 3 weeks though so, we're not sure how it will all work out in the long run.  The best case scenario would be for C to be able to transfer those skills to a more general setting but I just don't know if that's going to work. It's complicated when your child has to learn in the general education setting. He just started middle school and things are really though for him. We are looking at other options, not for this school year, we're already halfway through, but for next year. Until then, we'll just have to do the best we can.  In the meantime, we'll continue with the speech and language therapy since that's really what he needs the most. Second to that would be feeding but guess what? His feeding therapist had to stop after more than 7 years of working with him and the one we found, not too far from our house just closed shop and we never heard from her again. Go figure, right?
C definitely has hyperlexia so I think this reading comprehension kit is definitely worth a try. We're just going to keep trying, keep throwing different ideas against the wall and see what sticks or rather, until something sticks. After all, that's what we've been doing for the past 12 years and 10 months of his life. It's hard to talk about autism and how it affects our lives. It's hard to consider the future. I will never stop fighting but I still get scared for his future. And I know he's a high-functioning kid or so they say. Actually it all depends who we're talking to. In school, he's way too complicated. His language deficits make it hard for teachers to work with him, especially in his current setting but in a clinical or smaller setting, he's able to do a lot more. He definitely has autistic behaviors but as I explained in previous posts, he can follow the general patterns and expectations in a group. 
Well, I digress. We can discuss this in greater details in another post. I just wanted to share this newfound resource with you. Hope some of you find it useful.
Rebecca

Defying the odds.

This is a video of my son playing with Legos at home. I'm including the YouTube link as well, since it may not play on some mobile devices.  https://www.youtube.com/watch?v=gGjUzKRZTD8
My son struggles with reading comprehension yet, is able to follow instructions to build his Legos. Had to capture it on video. Couldn't believe how precise and thorough he was being. ‪I'm no neurologist so I can't say that I understand how the brain works, let alone the brain of a child who was diagnosed with autism or, shows traits of autism. C had a host of other issues even before we noticed his developmental delays so it's hard to say which came first. He was a medically fragile baby and maybe, some of what happened to him as an infant has something to do with who he is today. Then again, maybe not. The point is, he is definitely not your typical 12, soon to be 13 year-old boy. He has language delays, food sensitivities and social awkwardness but none of it severe though, the language deficits and sensory issues are pretty significant. In terms of social skills however, his functioning is considered mild. He wants to interact with other kids but sadly, lacks the language to do so correctly. He will automatically gravitate towards them whenever he sees them so in this way, his social skills deficits are mild. That's why autism is a spectrum; it varies from one individual to the next. When it comes to sounds, C does display some sensitivity there as well but it's minor. He's able to go watch a movie at the movie theater even if at times, he will cover his ears but, he won't ask to leave, won't become agitated because of the loud noise. He does motion stemming when gets excited during a movie, will rock back and forth, like he's leaning forward to get a closer look and that would be the extent of his autism display in this context. No popcorn. Because of the texture, he won't eat it. He will, however, take a handful of it and will just crunch it in his hands for sensory stimulation. He may taste it but will eventually spit it out. He has severe oral apraxia or as we say at home, oral defensiveness. But, as I was saying earlier, C's social skills are not the most challenging element of his disability; his language skills and eating abilities are. He can read though. He will decode any word, will memorize the spelling and copy it on a sheet of paper over and over. I believe this is called hyperlaxia, an uncanny abililty to recognize and memorize print. Apparently, it's a common condition in autistic individuals. When it comes to language comprehension however, it's a different story. Like many other autistic kids, C struggles to find the deeper meaning of words, though I must say that with therapy, he has made a lot progress. Our goal is to keep providing him with the proper support, in the forms of therapeutic interventions to help him go even further. But his language deficits are what made me want to grab the camera and record him while he was busy playing with his Legos. He was so completely absorbed by what he was doing, going from the instruction booklet to the Lego pieces that I just wanted to capture that on film. It's not often that you see your language impaired son actually showing that he can comprehend written language. Had to capture that and I'm glad I did. #‎Dontunderestimatespecialneedskids ‪#‎advocate #‎believe