Autism Watch: 2007

Archive for the ‘Friends’ Category

Back when BB was newly diagnosed, our social lives took a major hit. At the time, we didn’t care — we were too worried, too overwhelmed, overextended and exhausted. It got better as years went by, with us having a smaller, more focused group of friends and a new idea of what was ‘fun.’ Our priorities shifted and we adapted to the new way of life.

Now that BB is older, we can leave him with an older sibling sometimes. We don’t do it often, but it’s nice to know that there’s the option if something’s a big enough of an occasion, so we’ve got the ‘time out as a couple’ problem covered.

The other problem though, perhaps the bigger issue, is getting the day-to-day, run of the mill, routine errands and outings covered.

Today, BB had a homeschool event. Since we live in a small town, we take advantage of being ‘out in the big city’ to get things done. I had a list in my purse of things I needed to do: another shot at the podiatrist office, Petsmart shopping, a certain candy mold at Michael’s, prescriptions at the drugstore, book dropoff and pick-up at the library, and the gas station. I dreaded the list, so I could totally get that BB would, too, but what choice is there?

As we drove home, halfway through the list (as a few things were here in town), I was thankful I’d been able to accomplish as much as I had on top of the science class, but worrying if I’d be able to finish the rest. They were non-negotiable: books were due, car needed gas, and the prescriptions had been sitting at the pharmacy for days. Each one should have been just a few minutes, but a few minutes here, a few there, and before you know it, you have a kid so anxious and overwrought, you wished you’d scrapped the very idea of taking him along.

Luckily…or maybe because I reminded him that I didn’t push him to stop and have lunch with me so he needed to do this for me and so I wouldn’t have to go back out later…he did fine. Now, fine is relative. It’s “fine” if you think him leaving my car window down and locking it (?) while I was waiting for the pharmacy to fix one of the prescriptions to find me in the store is “fine.” It’s “fine” if you think him yelling at me to hurry while putting gas in the beast is “fine,” and it’s “fine” if I don’t mind him telling me “You know, you could have just dropped your books in the slot and not gone inside.” (Yes, that would have partially worked, but what about the book I had on order? Another autism book, though he didn’t know that part.)

Let’s just say it was successful in that I got my errands done and he didn’t have a meltdown. It was neither fun nor relaxing, and by the time I walked in the door…dogs jumping at me and mail falling out of my hands…I was beat. I piled the purchases, the bags, the purse, the receipts all over the counter as I calmed the Yorkie. Got BB settled in his room. Grabbed a beer…no, not really, but I may have wanted to. Maybe. All the while, I’m feeling slightly resentful that I didn’t get to pick up a decent lunch and that I again had to head home, hermit-style, because BB wouldn’t acquiesce to head into the deli for a sandwich.

I contemplated the resentment as I was balancing the checkbook from the day’s expenses. Maybe not the best time to have a serious thought discussion going on, but I realized that though I’d saved $20 and not endured a miserable lunch out in public, worrying that he wasn’t behaving, I was still having to craft the time around him a lot. Some things are vastly better, and this area is, too, but there’s still a ways to go.

Add ‘Handles social outings with ease’ to my list. Or at least with a semblance of tolerance? How do you do it? How do you meld your acknowledgement that pushing your child too far isn’t fair to him with your need to get out of the house?

 

Seems like you can’t turn on the news anymore without seeing something about bullying, and more and more, it’s teenagers who not only bully, but advertise it on YouTube, Facebook or other social mediums. It’s bad enough they’re doing it, but they’re proud of it and want others to see it.

The Dr. Phil show today was about four teen girls who beat up a 12-year-old girl (who already had a shunt in her brain, which apparently at least two of the girls were aware of) and video’d it, then put on YouTube. I won’t get into any further details as I don’t want to get anything wrong (you can find it at Dr. Phil’s website) but I will say it was very disturbing to watch, and not just the video but the reactions/responses of others towards what the girls all did.

As a country, we’re aware — the Bully Project movie is playing and many schools hold anti-bullying campaigns. Commercials stress that you need to stop bullying people for their race, their lifestyle, their orientation, but I would love to see them include the disabled. I go back and forth about whether or not we should even focus on the “who” of bullying — no one should be bullied, but with the increase of suicides related to internet bullying, I am aware that we have a long way to go so I’m on the fence. However, bullying is bullying, and bullying is wrong, no matter who the recipient.

We were coming home from the beach yesterday and BB mentioned, out of the blue, how he felt he’d been bullied by a past teacher. It was an interesting comment and his choice of words inspired a long conversation about what bullying was and whether or not he had actually experienced it. We didn’t feel the situation was bullying, but given that bullying comes in all shapes and forms, is bullying in the eye of the receiver? If he felt bullied, was he?

In his case, his IEP was being ignored and some teachers were trying to get him to just stop the irritating behavior so as to get on with the rest of the class and day rather than trying to help him learn better behavior. One example: finding out why he was tapping his foot didn’t matter; instead, he was told to stop tapping and when it didn’t work, he was moved to a corner desk. Alone and singled out, still with the need to tap his foot as the sensory issue wasn’t addressed, and it turned into anxiety and upset. Another: a classmate was allowed to pick on him for his facial tic because “that’s what kids do.”

Was that bullying? Or just lack of education in how to handle it?

We’ve decided that it is unlikely BB will return to a regular public school, in the format that lives now. Instead, we’re going to be looking for something more form-fitting, perhaps a techology-geared magnet school or program. It’s not necessarily because of bullying, though it sure does play into the decision somewhat. BB will need to learn to deal with the bad behaviors in the world. He’ll need to learn to control his reaction and respond appropriately, and/or walk away. We wouldn’t be doing him right if we just pulled him away from it all and didn’t prepare him regardless; he’s going to be out in the world, be it now or next year or in seven years when he graduates, and he’ll run into other bad behaviors displayed by fellow college students or co-workers, or just people waiting in line with him at the bank.

Until he gets old enough to be more independent, we will continue to work with him. Last week, after the homeschool event situation, we gave him some tools on how to handle it if it recurs. “Please don’t touch me.” Talk to a teacher. Seek a safe adult. We want him to realize that even if someone else is being mean, it’s no excuse for him to respond in kind. He can’t control their behaviors, but he can control his own. He is also worthy of respect and doesn’t need to put up with bullying or meanness from anyone. He may be just a child, but children should be respected, too. Bullying sends the message that you’re not being respected, and no one needs to tolerate that.Parents need to model the behaviors they want their children to emulate, so we as adults need to think about it as we’re out in public. Do we honk our horns at slow cars? Do we berate an employee providing customer service to us when things don’t go as we want? Do we fight fair? Do we make fun of people? And to add a new level to it all — do we go to Facebook or Twitter to tell the world about all of our problems? Do we share so much online that our kids think it’s normal for them to as well? Do we bash our husband, our employer or whine about every little twinge or ache? It may not seem to relate but when kids see us use social media to seek attention or antagonize, it rubs off. How many times have our kids said “Well, Mary did it too…” Do we want them to say “But Mom did it too…”

I know it’s not as cut and dried as that, but you have to start somewhere. I don’t want any of my kids to ever be the victim of online harassment or attacks, but prevention is a multi-pronged approach, and even then, not a guarantee of success. It starts with our behaviors, and continues with us watching theirs, addressing things as they come up and listening to their concerns. BB showed me that we may not see something as bullying, but if they perceive it as bullying, it needs to be addressed. Maybe that means just us explaining to them that it’s not bullying, or maybe it’s a red flag that yes, we need to step in.

It’s sad that bullying is such a problem anymore, but one person at a time, we can decrease it. Bullying the disabled — or anyone — happens every single day. We worry about 1-in-88 having autism — and we should worry about it — but like autism, we don’t know the cause or cure for bullying yet and until we do, we need to tackle it before the numbers are even higher.

BB has a new friend. Well, not entirely new — they met each other a year ago in organized sports we’d signed him up for and they’ve seen each other at school here and there, but it has ramped up a lot in the last few weeks as they’ve seen each other for various events, mainly BB’s friend taking him somewhere. Today, we invited his friend over to spend the day, and wow, is it better than Disneyland and the zoo and a computer game store all wrapped into one.

BB has some social skills. Now, that doesn’t mean they’re good social skills, but he’s trying. He plays well for a while, taking the lead, and when he doesn’t get his way anymore or he’s just overwhelmed, he heads back inside to play on his computer. Alone. He wants to have his friend, so after I remind him that leaving him alone out back won’t generate return visits, he heads back out. After a sigh. But I think I made a dent.

His friend is being picked up any minute now, and it’s probably just about time. BB’s mood is wearing thin, the kind of thin where we almost are at a loss and don’t mind if he finds that spending some time in front of his tv watching his DVR’d episodes of Dragon Ball Z and Pokemon is what he wants to do next…for an hour or so. It’s the kind of thin where we’re afraid he’ll offend someone by his impatience or he’ll be rude under the guise of being ‘honest.’ Still working on that one.

Our next step is probably Cognitive Behavioral Therapy, in addition to more advanced social skills training and behavioral therapy at school. And for me? Other parents to talk to, those who can understand what we deal with daily and talk to me without judgment. Oh boy, do I need that…

Monday’s looming large now, and with that comes an early morning. 6am rise and shine and at school by 7:15 in time for his new ‘job’ helping the school on a special project. Just like any parent of a school-aged child, there’s the regular routine, and there’s the feeling of not looking forward to the next five days of rushed mornings, packing lunches, signing notebooks and listening to him vent the entire ride home each day about every.little.thing that occurred. (Who needs a tape recorder when you have BB? I get the perfect play-by-play minus the video, except his explanation is pretty detailed and I can usually envision his stories.) It’s only 6:22pm and I’m already tired just thinking of it. Or maybe that’s just the twitch in my right eye coming back.

As our kids grow, in some ways things improve. In some ways, things get worse. When I can’t hold him and restrain him enough at 75 pounds, what happens at 85? Years ago, I went to a parent support group not long after BB was diagnosed. What I expected was everyone talking about their experiences and people nodding and then going on to the next person. What I needed was being able to hear other moms of kids BB’s age talk about their situations and confirm we weren’t on our own or that we weren’t the only ones who had to make nothing but dairy-free pancakes cut in perfect squares with 3.5 tbsp of maple syrup in order to prevent a pre-school meltdown. What I got was a room full of people all dealing with spectrum kids from severe to mild, sharing their stories while others commiserated, laughed or gave advice. Sounds great, right? It was, until we got 1/4 of the way around the room and reached the parents with kids in high school. Their stories were scary. I was so busy getting through one day at a time that the future hadn’t occurred to me, so when I heard more and more parents talk about how things were just getting worse, how their child wouldn’t get into the car for school (or get out when they did manage to cajole him into getting in) or how their child yelled and they had to call the police to stop a rage, I was devastated. The cookie I ate was boiling in my acidic stomach as my eye twitched a little faster. I think I stopped breathing for a several seconds too long, and I wanted to run to the bathroom, the foyer, the car, anything to get away, except I was in one of the seats that allowed for no escape without disruption. So I sucked it up and let my mind boggle and ‘go there’ while I listened and realized that it was all just beginning.

So many things are better since that day. I have a boy that’s often indistinguishable from his peers for a while, unless you look close, and he’s no longer hurting himself…often. But that doesn’t mean I don’t worry about the future. I know the mantra is to not worry beyond today, as each day brings its own worries, and to let go and let God, but that’s a work in progress. I too am a lot better since that day, but I’m still Mom, and I still have to remind myself that worrying doesn’t help, action does. Each day, more action to attain more improvement, and the end goal? Happiness for BB. And not just on days we visit Disneyland with the coveted passes I’ll be buying within the week we move back, but all days.

Yesterday, my husband talked to someone who said “Oh, and tell <our daughter> hi from us!”

Last week, someone said “And how’s <our daughter> doing? And xxx and xxx?” (XXX would be our older kids.)

Family isn’t immune — “Can <our daughter> come to the beach with us?”

We answer their sentence, then say “And BB is doing great…” I sometimes add “Thanks for asking!”

Apparently it’s not an acceptable answer — I’m supposed to just ignore the fact that they ignore him. My “Thanks for asking” comment is usually met with silence.

It’s like autism makes my son the invisible boy until we bring him up.

I realize that sometimes people don’t know what to say. You want to be careful not to say the wrong thing, so you opt not to say anything. But if you recognize yourself as doing this — I think we all have situations where we are at a loss for words — at least say “How’s <BB> doing?” You don’t have to specify, you just need to ask how he/she is doing. It means everything to us when our child is seen as just as good as everyone else’s child. Because he is. We all like to think our kids are the cutest, the sweetest, the smartest, the best..problem is, we all think that way, and a smart parent will realize that.

Autism doesn’t mean my son is dumb. In fact, quite the contrary, he’s incredibly gifted and working at an academic level years beyond his age.

Autism doesn’t mean my son is unaware of what’s going on around him. He’s surprisingly adept at listening to conversations while still focusing on writing HTML for a game he’s designing. He can hear a song once, while playing a game, and repeat it note for note, word for word, weeks later, without ever hearing it again.

Autism doesn’t mean my son is unable to do something outside of his scope of interest. Just like any other child, he’s got a lot of abilities but chooses what he wants to do. In fact, he’s probably more in tune with his interests and abilities than people without autism.

Autism doesn’t affect his hearing. He can still hear you when you let your child get away with calling him a name or when you whisper “It’s okay, go do your thing, BB will be fine on his own.” Again.

Autism doesn’t render him incapable of comprehending your speech. He knows what your words mean. He knows what it means when you say “I’m not going to keep coming to visit you if you don’t hug me.”

(Something I want to point out: that won’t make BB or any other child with autism want to hug you.)

Just because you don’t understand a child with autism or you don’t want to understand a child with autism doesn’t give you the right to be mean. Because that’s what it is: being mean. Ignoring a child for behavior he can’t control is like refusing to help push a wheelchair uphill when the person is a paraplegic, and who would do that?

Next time you deal with a family with a child with autism, ask about the child. Even if you have to fake it, ask. And if you have to fake it, maybe it’s time to re-examine why you feel that way — why does it bug you so much to acknowledge that this family is dealing with a child with special needs? Do you have to agree with everything someone does to like them? No, so why is a child with autism-related behaviors any different? Maybe it’s time to stop letting your personal feelings get in the way and just be the friend, the Godmother, the cousin, the aunt, the grandfather. That means loving the child for whomever he is and overlooking the rest, even if you don’t agree with the way the mom and dad parent him. Love him and respect him, just like you would any other child.

It really is that simple.

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.

Can I scream that any louder?

Maybe I’ve been dealing with autism for a long time, or maybe I’m just hanging with the wrong people, but there are days I want to block myself from anything and everything that is autism other than something related directly to my son. Ever feel that way?

What inspired my rant is when a parent I have known forever has an adopted son with autism, and he’s not enjoying ESY. (Extended-school year.) I don’t blame him, is what comes to mind. If he’s that unhappy and throwing tantrums each day, grabbing onto mom as he goes out the door and there’s no real ‘school’ during the summer, maybe staying home with mom is more beneficial. But I don’t say this. I can’t say this to this particular friend, because she is mired so deep in her child’s mild autism that she doesn’t realize that each and every conversation is about her son. His tantrums. His sensory issues with bright lights. His hate for clothing tags and his dislike for food that is square. His obsession with neatening up all the books on her office shelf every day. You know, the same types of things most of us deal with every day, so I can relate. But what I can’t relate to is her incessant negativity. I can’t tell you the last time I’ve heard anything positive about her beautiful red-headed green-eyed boy who, like BB, has a vocabulary that stumps some adults and who can tell you each and every thing about military aircraft. I don’t hear about how he just had photos accepted into a gallery in their town (as dad shared his photos one day with the owner, so his son is the youngest artist on display there ever!) or how his school teacher is cooperative and easy to work with, or how he can dive off the diving board into the pool barely making a splash. If you talked to her for a long while, chances are you wouldn’t hear any of the above unless you talked to her husband too, as I did to learn all the above, but you’d know how he’s still not potty-trained completely and how he doesn’t sleep at night. Oh, and he has an obsession with flicking his nose. (Not picking, flicking it in this odd way that’s completely eccentrically cute though I don’t know how his nose isn’t sore! Thing is, she sees it as one more thing she has to fix, and while I relate, come on, give the kid a break already.)

He’s her son, not mine. I don’t know what it’s like in her house 24/7, and neither of us know what he dealt with the first 18 months of his life before he was hers, so I am here for support but one day, I may just either bite the tip of my tongue off or lose it and ask what good thing he did today since I don’t want to have to call her husband to find out. (And in case you’re worried, she isn’t on the internet so she won’t find my bloggy story. In this day and age, it amazes me that I know three people who still really don’t participate online in any way. No email, no blogging, not even internet research or online bill paying! How does one do that?)

Next time BB’s having a bad day, I know I’ll likely have a lot of venting to do or I’ll share my displeasure in some way, but if I make an entry where I say nothing good about BB, let me know. My son is way more than autism. He’s a musical savant. He can do math far better than me. He knows HTML and designs video games. He’s drawn up a business plan and knows what he wants to be as an adult and how many kids he wants. He makes me laugh with his outrageous questions, and has far more wisdom than many of my peers, and even more than I have some days. When you talk with me, you probably won’t hear about autism unless you bring it up. He’s BB, and BB just happens to have autism. He also happens to be the cutest, most adorable, and most amazing kid I’ve ever met, and that’s what I focus on every single day. Even on the rough days, when I’m exhausted after he goes to sleep, I watch him and am thankful for what a gift he is.

Recently, I had a discussion with someone about how my advocacy style was so different from hers. She’s gung-ho about telling everyone she meets about autism, blogs about it frequently and does it without the protection of anonymity, and most conversations end up including autism to some extent. Me, on the other hand, I don’t mention it so much. Not only does my husband not care for it when I tell a random stranger, even for the purposes of perhaps helping one more person understand our kids, but I am tired of getting the ‘huh? uhm, yeah, okay’ response. I blog with anonymity, referring to my beautiful son as Barnacle Boy, a childhood nickname due to his attachment to me (still) and don’t want him ever reading this when he grows up. I also don’t want the people that I run into to feel like they aren’t going to be open with me for fear of showing up in my blog someday. (I know people who’ve found themselves the subject of a negative blog entry or comment, and being the social outcasts we autism moms already frequently are, why up the number of people who don’t know how to talk to us?) I also try to not include autism in every conversation — let’s face it, after almost seven years of a diagnosis, my friends know what life is like, they understand when I’ve had a bad day, and I only need a few words to convey what’s really going on. Saying “school called again” with a sigh is enough. Or just saying “it’s been a long day” suffices. They get it.

I think a lot of it has to do with the fact I’m not immersed in treatment 24/7 right now. I used to be. I had to be. My BB would bang his head on the floor in pain and/or anger and frustration, and he’d pull out his eyelashes. He’d bite himself, and us, tags and normal clothing textures made it hard for him to get dressed — and stay that way — and crying babies would throw him into a tailspin. His communication skills were off, he had no eye-contact, and the random stranger touch freaked him out. And then there’s the running away, the sensory issues, the other behavioral issues, and the social skill deficits. In many, many ways, there’s been vast improvement. Most people would look at him now and wonder why we’re so worried. But those would be people who didn’t see where we’ve been. They didn’t see us with bitemarks and bags around our eyes from lack of sleep or worry. They didn’t have to sit with us through a blood test to check his blood sugar level that was too high during last month’s physical (which was a wreck itself, because he hates being touched by strangers and of course, the doctor wants him to be almost completely undressed and that doesn’t fly with BB) nor go with us to the dentist, which was only two months ago that we had to switch because he bit the guy and caused him to novocaine his own hand.

But we know. And that’s why I continue to advocate, but in my own way. I focus on educating those that have direct interaction with BB, or those that ask me because they want to know more or know another family dealing with autism. I still throw out info to the random stranger sporadically, but I figure that unless there’s a reason, I don’t need to necessarily give them our story when I don’t know what they’re dealing with at home. Years ago, a woman felt the need to chastise me in public for telling my kids, while I was writing a check in a crowded store, to quiet down.  “You are so blessed to have them, you should remember that.” Uhm, okay? “Yes, I am blessed, I know that because of fertility issues that required a lot of fight to get my family size to where it is today, which isn’t your business anymore than telling me to not tell them to quiet down. Thanks and have a nice day!” Moral of that story? You never know what that other person already has dealt with, or is dealing with, so pick and choose who you give the autism story to. My feelings are that advocacy is most successful when used judiciously. Sometimes we are advocating for ourselves — it makes us feel better, but just makes the other person feel worse, and it is no longer advocacy.

My goal is to advocate for my son in a way that helps him, and the autism population at large, but without constant intrusion or sounding like a broken record. I have three other children, a full-time job, and a husband. I only have so much time and energy to go around, and for my sanity, I need to move on to other topics. My friends need me to move onto other topics. They need my listening ear, and to do that properly, I need to be able to focus on them; the time will come when I need them, again, and the friendships I’ve kept while on this autism rollercoaster are more valuable to me than I can possibly ever convey to them. The few strong solid friends who I will call friends forever are worth more to me than the many that I lost because they couldn’t understand why I couldn’t get through a five-minute phonecall without hearing BB cry or get upset in the background; they couldn’t deal with my being unable to go out to their house without BB having a meltdown or they’d get freaked out when he’d hide under a table; they couldn’t risk their child having to witness mine crying because he was again left out of a game or because I wouldn’t let the other kids call him names; mainly, they refused to understand autism and my son’s odd professorial-type of vocabulary fooled them into thinking he was just a brat and we were bad parents, with the fact that we had three other children, all older, who weren’t ‘brats.’ The list goes on, and there are times I wish I could really give those people a trip through time to show them what life was like, what we’ve been through, and most of all, what my amazing brilliant son has gone through, and how far he has come.

Our children are the epitomy of courage. They don’t give up. They are examples and should be seen as the brave people they are and that’s where I want to focus my advocacy efforts for now. I don’t want to raise money to go in some administrator’s pocket or tell me what gene my son has that’s not right, nor tell me some other reason why it’s my fault he has autism. Sure, I want to know the reason so we can prevent other families from going through this, but I also think money rarely goes to the families who need it the most — those dealing with it now. One-income, two-income, ‘rich,’ poor, it doesn’t matter. It’s too hard to get help, and as a result, we learn to do it ourselves, and that’s advocating for our child in a way no one else can do anyway. So even when we’re not publicly advocating, we’re privately advocating, and that’s enough for me.

 


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