Autism Watch: 2007

Posts Tagged ‘friend

Two weeks ago, I took my son in for his yearly well-child checkup. (I still want to keep referring to it as a well-baby check-up. I am in denial that he’s now ten.) I got the dreaded news that he failed his eye test. Actually, I figured it out as he was attempting to guess what letters he was seeing and my jaw kept dropping further and further as I saw how bad it was. How did I not notice this sooner?

Fast forward to yesterday, when we went to pick up his glasses. He’s so.darn.cute. He chose his own glasses, and I was super-thankful he chose a pair that was not far out of the range of what our eye insurance covered. (Does it ever really cover frames 100%? Everywhere we go, the frames are always priced outside of what the insurance coverage is.) For his first pair, I didn’t want to break the bank in case he broke the frames. It’s a habit to get into, being careful with them, removing them when you need to, remembering where you put them, and putting them in the case. Cleaning, all that stuff. I was concerned but he has, like he usually does with challenges, risen to the occasion. He loves his glasses, says life is now in HD, and is thrilled that he can see nature so clearly. That’s my barnacle boy.

I took a business trip this week, and was away for two days. I missed him all the time, but let’s face it, a break is a good thing at times, for all moms and all kids. (And if you say it’s not…I think you’re not being honest or you’ve never had a break and relished the uninterrupted time to ponder the little things in life that slide by in the rush that is parenting. Trust me on this, as a mom of four, time away is good for you AND for them.) I shared photos on my FB page, and was glad when one inspired a friend of many years ago to respond because I’d traveled to a place she’s always wanted to go.

I didn’t know it, but my friend works online now and is enjoying being able to work at home as opposed to heading to an office each day. For years, she tells me now, she didn’t realize that working from home was/is a job like any other, with supervisors to report to, accountability, and deadlines. Now though? She gets it in spades. She was a journalist for a local paper when I met her, and now manages a small staff of writers for an online publication, and while she loves it, she’s found she’s struggling with parts of it as she adapts. She had to miss a child’s performance. Having to say “Not now, I’m working” makes her feel selfish. Then she was asked to release a writer, and it was her first time. I virtually held her hand as she dealt with the guilt and the fallout in the last three days, and felt for her. Been there, done that, and it’s awful. Of course, the writer was unhappy and blamed her, though like in any company, my friend didn’t make this decision on her own and was just the messenger. It’s not a fun place to be, because she can’t really do anything about it nor say anything as she is contractually obligated to direct them as she’s been told to direct them, and to zip her lip otherwise — she of course can’t even tell me details — and she’s still talking about how she hates to be the bad guy. I felt her pain, because when you aren’t seen in person, it’s easy to be misunderstood when in reality, you’re doing your job, even the hard parts no one likes. It’s something learned in our years dealing with autism. I may not like what I hear in an IEP or from a teacher, but people are usually doing what they’re told so getting ticked at them, and then holding onto that anger and bitterness takes away energy from focusing on your child; I tried to remind her of this while giving her the much-needed hug, so she hopefully was able to take it for what it was, understand the writer’s feelings, right or wrong, and move on while hoping the writer did too. (If you’re wondering how that ended up, the writer blasted her on FB and now wonders why she’s having a hard time getting another gig. It’s sad all the way around. So much negativity, sort of like in high school when someone steals your boyfriend and you vow to never talk to them again, and you tell others bad stuff about them, true or not, and then you grow up and realize that life’s not all black and white and maybe you weren’t a good girlfriend anyway.)

I think we’ve been able to upgrade our friendship based on a new shared thing in our lives: working from home while managing an autistic child. See, she too has an autistic son, and while he’s a couple of years younger than BB, we met when our kids were in a social event but had little else in common. Now we can support each other through not only autism-related issues, but the different world that you live in when you work at home full-time and don’t have the same type of day-to-day life you do when you’re in an office and I don’t have any other physically-close friends who work at home. We wouldn’t have met without the autism connection, and while I’m sure both of us would rather not have that, the reality is that we do and because of it, we’ve been able to make new friendships that add so much more to our lives in other ways. It hasn’t been long since we reconnected, but I think it’s going to be a lifelong relationship. Life works in mysterious ways.

Autism may not feel like it initially, or even years later, but it’s expanded my eyesight. I see much more than I used to. My life is expanded, not limited. I lost friends during the early years of diagnosis, but I have gained many more as time goes on. My son’s eyesight is expanding now too, and we all see clearer.

One of BB’s most common issues anymore is social skills. As a result, making friends is the most important thing to him…outside of coding new pages in his online building game. (The kid definitely has a career in game design, architecture or web development.) He has talked about it since starting his new school, and before the end of last year, he’d met one boy he really wanted to be friends with. Fast-forward to the new year, after a summer filled with family visits, beach trips and getting to know our new area, and he was still close with the boy. Daily phonecalls got longer and more frequent, and this last Friday, he was invited to spend the night. Hallelujah! Prayers are answered. And better than you expect they will be.

On Saturday evening, we picked up an extremely exhausted but oh-so-happy little man from his friend’s house. They’d spent the day at the beach, and his little pink cheeks were laying down in my car before I could even get in it myself after saying goodbye to the very nice family who took great care of him. Things all went well, and we invited the boy to visit our house this next weekend. By the time he went to bed last night, they’d talked on the phone three or four more times, and another boy had called and talked to him, too!

I still need to work with him a bit on not speaking his mind so much, and being forgiving when things don’t go as he’d prefer every single second, but he’s come such a long way.  Sometimes it feels like we spend more time having to focus on fixing things, it’s that much more wonderful when we get to watch him just be a little boy. And to quote his favorite phrase, “Period.”

So I’ve been gone a while. Took a break. No real reason other than living and breathing autism 24/7 was too much. I would turn on Facebook and see an overwhelming number of status updates about autism: articles, stories, news, etc. It was all I saw on some pages. That’s nothing bad about those people — but it’s just more than I could do. We’re in the midst of this move and BB is having issues at school. Keeping on top of all that was enough…or more than enough. Neighbor issues with little guy, meanies out and about, and I just wanted to move on.

The holidays were good. We had a lot of gatherings, and I also was fortunate enough to be able to fly out to the Carolinas to help my sister-in-law after her surgery. I was gone nine days — I was having a “can you really do this without me??” moment…or several…but it’s husband’s sister, and he really wanted me to go, in a non-pushy kind of way. “You’ll like this. You can bond. You need the break. You can help while having fun.” And in one of those “man, I hate to acknowledge it, but…” moments, he was right. I did like it. We did bond. I did need the break. I think I helped, and I know I had fun. It reaffirmed my feelings about moving out there, and it allowed me the opportunity to just live out there — driving my niece to school, shopping, getting gas, and working. (I worked all but one day of that time. Saving my days off for the move.) I got to know my niece and nephew much better (I miss them!), I checked out the local places to shop and found that the Wal-Marts of the south are nothing like the hellholes crowded whiny employee dirty buildings I’ve experienced out here. I learned how to put gas in a car, even if it was an old-timey nozzle that we actually had to TOUCH, and I enjoyed working while looking out at trees that were changing color, with nature making its beautiful sounds. Gorgeous. Just driving to school in the mornings, I loved seeing the Christmas decorations all over. They do it right there! None of this political-correctedness of SoCal, where saying “Merry Christmas” can earn you a nasty look. In fact, I came back and challenged anyone to hassle me when I said it, loudly and often. Not a single challenge! I felt better, ahhh.

Anyway, I returned a few days before Christmas and jumped full-bore into celebration mode. I’d finished shopping and was able to just spend the time with the family and friends. Cookie-baking, Christmas light tours, fun dinners, open-houses, all that stuff and more. Little guy did wonderful at the holidays and only had a few meltdowns. He’s working harder to be aware and we’re working harder to not flip-flop on how we handle him. We did a lot of fun things while on vacation — like cleaning out BB’s desk, decluttering the rest of the kitchen cabinets, putting away Christmas gifts — and also threw in a New Year’s Eve bash. And by bash, I mean bash. So many items were bashed in the trash can at the end of the night..everyone left happy and safe, and quite a few slept here. We get to leave California on a high note!

And on that note, the For Sale sign is in the front yard. The realtor is assured the house will sell quick. Phew. We also experienced an amazing blessing that words can’t quite convey. Several months ago, a dog trainer for service dogs visited our therapy group. We listened to his talk with much interest, but that interest turned into disappointment the next morning when we learned just how expensive they are. We don’t begrudge the cost — the dogs are beautiful and take a lot of time/equipment to train — but it was money we didn’t have. Then stepped in a woman with a huge heart and a  beautiful soul. She donated a dog to BB, a trained dog. Therapy and service-trained, he is so darn cute. BB is thrilled, but learning how to handle him while handling himself. It goes hand-in-hand, as the dog is a calming device. He’s cuddly, loving and a re-direct when BB’s upset. And, just for fun, we threw in a Yorkie; we’ve never had house dogs, and now we have two. We don’t mess around!

I don’t normally whine about my health, or at least I try not to, but I got the MRI results for my back: two herniated discs, and two bulging discs. Then, just for fun, I had to get an ultrasound on Christmas eve because they found a lesion on my kidney. Great. It’s really cut into my running time, which has kept me feeling healthy, but I managed to get back on the horse today and run a 5k in under 31 minutes. We’ll see how I feel tomorrow.

School’s back in session tomorrow, and BB is nervous and anxious. He is concerned that his one friend there won’t be allowed to play with him anymore; we tried to invite him over the holidays, twice, but each time he was busy “all week long.” Then he’d show up playing at another boy’s house in the neighborhood. Two moms get together, one blabs and a little boy with a disability pays the price for others’ ignorance. At least we’re moving soon!

It’s time for Family Movie Night now. Another Scooby-Doo movie is on tap. I’m ready to fall asleep after a late-night yesterday — BB’s friend celebrated his birthday, and BB was his guest for the night. Wahoooooo! He did wonderful, not a single problem, and we went out to lunch, shopping, dinner, and saw Avatar. Amazing movie, though I did doze for about five minutes early on until the pace picked up. Then I was glued. Go see it. Just plan your potty breaks well and settle in for the long-haul with shoes that haven’t caused blisters. Taking off boots during the movie, with people walkin back and forth to the snack bar and bathroom, is not something you want to have to do. Trust me.

Happy new year!

To me, it’s always such a remarkable coincidence that when my son shows up on the front yard of any of the kids in the neighborhood, they suddenly have to go inside for dinner…go clean their room…go dig up the bodies in the backyard. Okay, so that last one was an embellishment but you get my drift.

Note to parents who don’t want their little preciouses to learn compassion and how to play with someone different: come up with some new reasons. Open your child’s mind as well as your own. Bigotry comes in all shapes and sizes, and you’re perpetuating it.

Now that I’ve gotten that off my chest — within five minutes of yet another miraculous Emptying of the Neighborhood — I feel better, and I can go on with my excitement over another great day of being with BB. I worked a half-day — Fridays are frequently half-days during the summer where I work, yayyyy! – and then we hit up the local Brunswick alley, where I must have seemed like the biggest ignoramoose ever seen. How much is a game? Oh, per person? Shoes cost too? How do I reset the pins? Bumper guards, yeah, can we have them, too? Do we each throw the ball twice per turn, or do we go back and forth? Yes, I am a Bowling Virgin. But, thanks to wonderful lane-neighbors (who are nicer than some of my real neighbors, ha) we muddled through set-up and played three games. We also experienced bowling alley pizza and then finished up with a rowsing game of air hockey.

BB at the Bowling Alley

BB at the Bowling Alley

It was a blast! $27 poorer, we left to make a quick trip to Trader Joe’s (had to get some wine for our Mexican food-themed Nascar race party on Sunday) and then to the post office to mail a friend something. He did great on both errands! Well, great may be an exaggeration, but he didn’t get mad, and that works. He’d never been to the post office before, and he really doesn’t care if he never goes again. (One guy in front of us hadn’t been around for delivery and took quite a while to complain about it..over and over despite a long line of waiting people.) But, still, he did it, I got all my errands completed, and we came home where he could decompress while I caught up on stuff, checked in at work, and made crabcakes (homemade) for dinner. In another 1.5 hours, we’re off (or maybe just me — I’ve been bribed with a Roadhouse Tea) to pick up dh from the airport. He gets to help me further plan Sunday’s party, though he can’t attend. But, it was his idea, so he’s not off the hook that easy.

Enjoy your weekend, and if you’re hiding your child in your house until mine goes away, shame on you. He’s autistic, not stupid.

First, today is World Autism Awareness Day. I wish there was a way to roll the word ‘advocacy’ in there, but a website url can only be so long and be remembered. Bumper stickers only so big. Headlines only hold so many characters. Check it out at: http://www.worldautismawarenessday.org. It isn’t the end-all, be-all for autism, but I’ll take it. If it gets just one more person to learn about autism, that’s a success in my eyes.

So much going on lately. No, no major illnesses, traumas, situations, just a lot of stuff. Just a ton of stuff. I bought a new car; I figured driving an 8-seater SUV we bought when we had all the kids younger with us regularly no longer was necessary now that I’m driving just a couple around. I also hated parking The Tank on regular errands, and my dh either took pity on me or got tired of hearing about it, so he decided the time was now. I got my ‘dream car’ for all intents and purposes and in today’s economy, got one heck of a deal that makes it completely affordable all the way around. (And to fill a tank on $35 — who knew you could do that??) Getting the alarm/bluetooth installed took FOREVER to get resolved, but the dealership was spot-on solid about customer satisfaction, so thumbs up to them despite me having lost almost a week of my life that I’ll never get back.  We also went camping and half of us ended up with the stomach bug. Work got busier, and the cockatiel noisier. (You’ll see why that matters later, I promise. I may be weird but I usually make sense.) And there’s ds.

The last few weeks, something’s been off. He’s had a lot of headaches over the last six weeks, resulting in the need for a panel of blood tests and an MRI. (Or as he keeps calling it, an “MRD.”) He’s been tic’ing a lot, this gulpy breathing tic that bothers me more than it should, way more than it bothers him. His temperament is completely unpredictable; he’ll be great one minute, inordinately angry the next, and crying a few minutes later. Then there’s the lips. And that’s where the problems get worse.

With the headaches/migraines, ds has had a hard time finishing a full day of school without a visit to the nurse. We try to get him to stay the whole day, but if his head hurts, he can’t. Yet, if I keep bringing him home, he’s got too many absences. We’re waiting on our follow-up neuro. appt., but that’s not for two more weeks. There’s no way to get him in there sooner, and even that will require him to miss some school time.

Attendance at school is not as important as we’re led to believe. As a past homeschooler, this I know for sure. I may not know everything about autism, but I know that autistic kids interpret stress and other things they can’t identify in ways we don’t understand. A headache could be anxiety from having to sit still too long while waiting for other kids to finish their work, a problem he tells me about frequently. (He chose to up his RSP time to help with that.) A tummy ache, that could be stress from trying to get along while the buzz of the fluorescents and the breathing of the bumping child next to him distracts him. We all get these things, but as non-autistic people, we find ways to get by. Our kids? Not so much. These are things not easily remedied in a school setting, but if we bring them home, not only are we showing them they can get out of an unpleasant situation and skip learning proper coping skills, but we have the dreaded lengthy list of absences.

So it puts the parent in a difficult situation. Unwinnable. You can’t necessarily make their illness go away while they’re at school, but if you bring them home, where they will feel better, then you have a whole different problem. What to do?

I’m giving my son a pep talk every morning. “Don’t go to the nurse’s office unless you are completely sick and can’t stay.” I don’t want the poor thing struggling through a day with a migrained, but where do you draw the line? How do you know? And how do you improve communication skills so the real problem shows through and isn’t masked in some aching body part?

Lately, he’s complaining about his ‘friends’ at school again. I say the word ‘friends’ lightly, because, in my opinion, friends invite each other to their birthday celebrations. Friends don’t ignore you when you call their name, and I’m not sure if it’s even called ignoring when the kid looks directly at your child and then keeps going. Friends don’t play right in front of you and pretend you aren’t there. I feel sorry for today’s kids in sort of a big picture notentirelymybusiness kind of way. (And if this doesn’t apply to you, disregard.) Kids won’t necessarily have manners, compassion and know how to treat a friend if they’re not taught. This is where parents come in. It’s not the school’s responsibility. (But, I would expect teachers to address it when they’re seeing it.) Parents need to teach their children how to not treat someone else badly just because they’re different. Not to ignore someone who calls their name. To be nice to someone when that person’s not harming them. How is a kid supposed to learn if mom tugs the little girl’s hand away as fast as possible when your child says hello? How is a kid supposed to learn if mom says “stop!” to her own child (and worse, yours) when they are playing nicely, for no other reason than she doesn’t want her perfectly neurotypical child playing with your non-infectious ‘different’ kid.

See, here’s where I differ from a lot of people. I haven’t shared my son’s diagnosis with the classroom and students at large. I don’t feel I should have to, nor do I feel it’s in his best interest. I’ve considered it. (Well, “we,” as in dh and I, but I’m the blogger, so I’m going to talk about me. It really is all about me.) But, the judgmental attitude I experience with some parents wouldn’t magically disappear. Many parents would just change from “you poor kid, you don’t have to subject yourself to playing with the different little boy” to “you poor kid, I won’t force you to play with the kid who can’t control himself.” Yeah, I have a bad attitude…today. Or often? Hard to say, but I am still wondering how my son is supposed to fit in, or learn to fit in, with other kids his age when few give him a chance? We expose him to as many groups of kids his age (and older/younger) as we can, but his differences make him stand out, and few people want to take responsibility for having to deal with it voluntarily. So, he’s been invited to two birthday parties in the whole last year, and two friends have him over. And I know, we are more blessed than many by having those two friends. Thing is, my son’s not that much of a handful. He is a handful, yes, but there are times when he just needs to be a regular little boy. But, I digress. See? So much to say, so little time..and room.

It’s after 1pm my time, and no call from the school yet. He has an awards ceremony in an hour, and I will be there in the front row, or I’ll have to show someone else out of my reserved (ha) seat. He’s getting two awards. I can’t wait to see the smile on his face! People often underestimate the importance of praising a job well-done. They don’t realize that so many autistic kids want to do well, they want to be a part, to be accepted, and to be proud of what they’re doing. They’re proud of it, so they don’t see why others aren’t. My son will float for getting awards. Such power in saying “good job.” Such positive motivation to say “I like the way you xxx” instead of saying “Why did you xxx.” If only we could teach everyone that.

So what did you do for World Autism Awareness Day? There’s still plenty of daylight ahead, so what’s your plans for the rest of the day? My respite nurse has a sick child, so I won’t be using my respite tonight, which scratches out my plans, but on the other hand, I’m going to take my little guy to Borders to buy Jenny McCarthy’s newest book, Healing and Preventing Autism, and we’ll hit up Seattle’s Best while in there. (Grab her book if you can! She and Dr. Jerry Kartzinel did an amazing piece on GMA this week, despite all GMA’s “experts” refuing what they said. The proof is in our kids though.) Then we’ll come home, make some pizza, and snuggle as the clouds and rain rolls in. Works for me!

Yep, another one of those entries, the kind where I share an incident where my son overcame a difficulty but my heart still breaks for him. No tissues necessary.

Waiting at the gate, he’s late coming out. I see the little girl he has issues with walk around the corner sniffing. Finally, I find him sitting on a bench talking to his teacher. That in itself is an ‘oh no, what happened now?’ moment, but do you ever have times where you look at your child and you are so overwhelmed by love and a bit of fear for him, and this overwhelming need to grab this beautiful little miracle and run away to an island? This is one of those moments.

He’s sitting next to his teacher, who is patiently explaining how to better handle something. He’s looking in her direction..at her shoulder or somewhere in a distance, as he’s nodding in response. His eye-contact is nil. He’s wearing a polar fleece ear-warmer on his hand, upside down. (Someone gave it to me.) He’s flapping his fingers, and he’s wearing his ‘weighted’ shoes (aka heavier shoes that don’t quite qualify as casual shoes or dress shoes or boots and are definitely not sneakers), tapping a foot up and down. He looked SO. DARN. CUTE. It was like someone was pulling out my lungs, I wanted to just hug him and never let go. This stupid autism, how dare it mess with the ability for my child to just be a child?

After a little more talking, where I learn he’s not in trouble nor did he cause any, I also learn that the teacher’s working on a way to resolve these issues between two kids that entirely rub each other the wrong way. I try to get ds’s attention, but at most I get a glance to where I’m standing, no higher than waist-high. No pretty eyes for me either, and I live for those pretty eyes. I can see my little boy shrinking inside himself, and my heart just contracts. Does this ever get easier?

Social skills are so undervalued in society. People think that being a loner is okay if the child wants, but what if the child doesn’t want it? What if the child wants to make friends but just doesn’t know how? What if he can’t pick up on the nuances and subtle body language, facial expressions or even sighs?

This morning, I took him to school in the midst of gale-force winds. (Did I mention that winds usually make him anxious?) He sees a little girl he likes (“Just friend-like, Mom, not girlfriend-like, but she wants to marry me still.”) and asks if she wants to play with him. He doesn’t really look at her, just talks in her direction and has this little smile on his face, almost as if he’s trying not to smile and is afraid she’ll say no. She says “Hmmm, what about recess and lunch but not now?” He comments back that he just wants to play with her whenever “if you want to, though.” She agrees, and out comes the rest of the smile, though he was really trying to hide it. Again, my heart just ripped some more. This precious little boy so wants friends, so wants to play and so wants to not have the anger issues that he does. And I so want that for him. I only wish I knew how to achieve it. The island won’t help, I know, but at least he can’t get his feelings hurt there.


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