Autism Watch: 2007

Archive for the ‘Autism in the Family’ Category

In a perfect world, our children would go without nothing. They’d get every treatment and/or service they need, and we’d not have to pay anymore for it than anyone else with a disability or medical concern, regardless of income. However, as we all know, treatment for autism is still considered ‘experimental’ in many forums, other than ABA, and services are most readily available for those with unlimited bank accounts. For the rest of us? We hope and pray that someone will provide something, anything, and we become the world’s biggest advocates in order to make that happen.

Being an advocate can make an introvert a public speaker. It can give a shy person who doesn’t like to talk to strangers an eloquent speaking ability. It will make a low-key, laidback “go with the flow” mom get on the phone each day and push, in a way she never has before, for answers, and she won’t settle for anything but the right kind of answer.

This is good, right? Well, yes — because if we don’t advocate for our kids, no one will. But, there is a reasonable limit and no matter how desperate we are, I think we need to realize when we’ve reached it.

Today in a group I belong to, someone asked what kind of help they can get on vacation: could they require the hotel to provide a chemical-free room? Could they require the hotel restaurant to provide a nut-free environment? Could they require the state to find a place to find services for their child while on vacation, as in speech and O.T.? And my favorite, could they require the state to provide respite so the parents could go out alone.

You could have heard a pin drop.

No one answered.

There was a couple of coughs and throat-clearing sounds, but no eye contact with the woman who asked the question. It was clearly a mix of “I am at a loss for words” and “I can’t speak for fear I’ll say something I can’t take back.”

In the end, a calm person spoke up and said “Good luck with that. You’re on vacation, something most of us would give our right arm to take, so if it was me, I’d probably be super-glad I could take vacation and sacrifice the week of services.”

Other responses popped in my head: “It’s vacation, no one’s making you take it, why should the state be liable for anything? If you don’t want to miss out, don’t go.” But I didn’t answer.

Somehow, the conversation quickly changed to “Vacation? Cool! Where are you going?”  At first, I was relieved, ahh, re-direction, now she’s changed the subject, no one has to address it, and it was done so politely, she can’t take offense. Then as I thought more about it — and got irritated at her question — I realized that the goal of at least one other parent was to say exactly what I’d been thinking: vacation, an optional thing you don’t have to take, enjoy it, let your kid be a kid while you’re out, and if you don’t get a night out alone, oh well, it’s vacation!!

Then surprisingly, two  moms started making suggestions — call this number, ask this place, etc. There was obvious discomfort that we’d gotten back to the topic. Some people were “mutter mutter, I wish I could afford a vacation,” which was totally off-topic, and others were “Why are we helping her with this when we’re talking about VACATION? We’ve got people here who can’t figure out how they’re going to get through the next day because their child is still in diapers at 14 and the self-injurious behaviors make it so they can’t leave the house to run to the store, much less go on vacation.”

I stayed quiet. I knew no good could come of my contribution then, but I’ll share it here because the more I think about it, the more I think I did a disservice by not speaking up. Sure, it may have been seen as “tsk tsk! She deserves a vacation like everyone else!” but come on, let’s be realistic — no one ‘deserves’ vacation. Yes, everyone deserves to be able to relax, but a vacation is indeed a luxury. The state is not required to jump through hoops to keep your child’s services at three days a week if you voluntarily choose to leave the state; nor are they required to provide you a babysitter so you can go out at night.

Before I had BB, I took vacations. We have three other children, and as BB is six years younger than the youngest of the sibs, we always had children along with us. We didn’t get a night out away from them — a hotel babysitter, IF available, was cost-prohibitive. Plus, we were already on vacation, did I really need to have that added luxury? Nah, I’ve got a lot of years ahead of me to come back and do things I can’ t do with kids along.

This is where I think our requests take a nasty turn. We are definitely in the right when we request things that keep autism services on par with the rest of the medical-needs community; however, when we want MORE than others get, when we see ourselves as more deserving or require things that make life easy instead of just being necessary, we are not only taking money from an already too-small pool, but we are becoming one of those parents, the kind that make people say mean things and it makes it harder for the reasonable requests to be granted.

Flashback to a couple of years ago, when I spoke about a friend of mine complaining that she had to take her son to school each morning. “I have to get dressed!” Wow, poor you. So she made a huge stink and got the local district to bus her child to school each morning to the school she insisted he go to, even though there were many schools closer. Not only was her son on a bus for 40 minutes, but she negotiated it that on days she decided to get dressed and drive him, she’d get paid for every mile. Wow. On one hand, kudos, you must be a heck of a negotiator and the school is a pushover; if they agreed to that, then it’s their problem. On the other hand though? Come on, you are responsible for some normal parenting things and if you choose to move so far away from the school, why is it the school’s problem?

Those are the parents that give others a bad name. I want to be seen as an advocate, not a ball-busting bitch. I want to come to the negotiation table with people who aren’t defensive just knowing they have to meet with yet another parent; I’ve had them tell me before, on our first meeting, “Thank you for being reasonable. We do the best we can, and while it’s not always enough, we appreciate that you’re not yelling at us.” It always amazes me, because I don’t leave that room until my son gets what he needs — but it’s about him, not me, and I think sometimes we forget that. Parents of kids with cancer, heart problems, CP, etc., they don’t get free babysitters, zero co-pays and no deductibles; they have to drive their kids and if they go on vacation, they choose it around appointments or they don’t go. Why are we any different?

“But my son has special needs!” It’s not a weapon, and it shouldn’t be used like one.

BB woke up this morning in an awesome mood. He woke up before me, in fact, and woke me up. (Not something I view as his best choice of the day, as I was having a really cool dream about traveling…) He was being uber-sweet, turning on my coffee pot, and he even got me a big coffee mug and the creamer. Ahhh, life is good. A relaxing morning, a promising day at work, schoolwork planned and prepped, good coffee and a happy BB.

Then it happened.

Mom, I have a headache.

What level? 6.5.

I give him an ibuprofen and get him settled on his bed with a movie.

Thirty minutes later, it’s 7.5. He decides he wants to forego the next prescription in his migraine arsenal, so I let him be in charge.

Thirty minutes later, it’s still 7.5. Sorry, BB hon, you need to think about the pill.

“Mom, it makes me dopey.”

Yes, son, I realize that, but dopey or pain, out of the two, isn’t dopey better?

He takes the pill. Cut in four tiny pieces.

He snoozles a little, watches more tv, and two hours later, he’s out of the room, bored.

Then what I call a depression cycle rolls in. He sobs, he cries, he’s bored, this day is bad, it’s awful, it stinks, it’s not a good day.

Bud, I’m right there with you. Not only do you feel like crap, but there’s a work issue that’s out of my hands. Sometimes, being a manager means you have to make or take part in decisions that are difficult. Things that have nothing to do with you personally but are part of the job; in management, decisions are made that are in the best interest of the company, and they’re not always pretty. I guess it’s human nature to shoot the messenger, but it can really make you wonder sometimes why people don’t understand that or want to make you out to be the bad guy when you’re not operating in a vacuum. I’d like to be all-powerful, in charge of all the things I can do each day without getting approval, different from now, but then again? Maybe not. Oh well, it’s a job and I’m fortunate. This job allows me to help my family and be home with BB, and he desperately needs it.

So what do I do? I turn off my work machine. I get out the popcorn maker and get BB settled on the couch. Turn on On Demand, rent Rio, and laugh together. Perfect medicine for both of us.

Autism has brought me extremely close to my son. It’s not something I’d ask for — my other kids obviously can’t get the same amount of attention, and it’s not fair and I hate it daily — but you take what you’re given and you move forward with it. I can’t afford to let a bad day at work get me down, and it’s a three-day weekend, time for a lot of prayer, relaxation, hanging with the kids and time with my best friend, my husband.

Migraines, stay away, we’re done with you here for a while. Give the kid a break, okay?

Sometimes, when things are good, we can go days without really thinking about it. The word “autism” doesn’t even enter my head on a level where I have to focus on it, because so many days, that’s just how BB is. I don’t see him as autistic or see his odd behaviors or problems as autism, it’s just BB. But some days, it hits you. Bam, the kick in the stomach that reminds you: my son has a disability.

Autism.

It hits you hard and you almost have to remind yourself to take a breath, because you hadn’t thought about it that way in a while. Maybe it’s just me – maybe I compartmentalize and some might say that’s a bad thing. Some might say “Well, how bad can he be if you are able to forget,” so let me clarify — it’s not that I forget, it’s just that I see him as his own person, just the way he is, and I’m so used to his eccentricities, his sensory problems, his OCD behaviors and the meltdowns that I don’t focus on him being a child with autism. I just see him as a child who needs my love and attention in some different ways.

Yesterday was one of those days. On the heels of last week, when BB refused to go into the school in the morning, and he was a stressed, anxiety-ridden little boy who visibly shook when we mentioned school over the weekend, I didn’t figure yesterday morning would go easily, but I also didn’t expect it to go like it did.

Long story as short as possible, we went to school, with the homework the assistant principal had given him, basically a list of all the things that bothered him, things he wanted to discuss and have fixed. It was a well-written list, big words, proper grammar and spelling, but it still wasn’t pretty. He was candid, almost brutal, in his explanation. He doesn’t like it when someone touches him unasked, so he didn’t hesitate to name names of those who didn’t abide by this rule. (But I have to say, if you have a child with autism in your class, you should also know enough to not just touch them unbidden, so I didn’t feel sorry for those whose names were listed. If you haven’t taken time to learn about autism, knowing you have a child with it in your class, you aren’t being fair to yourself or the student.)

BB handed the list to the AP, and turns to head back to the car. Uhm, no, baby, you have to go into the building. All heck broke loose from there. Reminding him, as quietly as possible, that he wants to be seen like everyone else, so falling to the ground and trying to run away will make him stand out didn’t work. Four staff/administrators later, we were still there. Cars had all gone, and this was when it was a blessing that I have no friends here and neither does he. (Small towns? Not always friendly to newcomers beyond the hello, how are you. And if you’re different? The stares and actual “wow, I’ve never seen someone like you before” comments abound. My daughter’s blue streaks in her hair for Autism Awareness month? Mouths would drop open.) Because of our lack of attachment to anyone here, we were just another group of people on the sidewalk thankfully.

However, when we were still there 45 minutes later, BB in the car after us having given up, my stomach was in knots. My left arm had no feeling, as I’d used it mostly to hold him to me rather than running away. The AP doesn’t believe in dragging children into class, nor do I. If he’s going to be miserable outside, what happens inside? Is it fair to him, and if it escalates, we put him into the position where he could get even more in trouble. So back to the car he went.

This afternoon, we have an emergency IEP. Plans for what to do to make him willing to at least go to school for a modified schedule, for social purposes mainly, will be formulated. We’ll be discussing things that will motivate him to go into school, even if it’s computer-based projects or helping someone out. Then we need to work on friends. How to get him to make friends without the adult intrusion he doesn’t want?

Then we get to discuss ABA and social skills services. We aren’t signing anything that doesn’t include both in writing. Now that they’ve seen the good, the bad, and the ugly, they are aware that a lot goes on behind the surface. They realize that while he may look ‘normal’ quite often, there’s a whole new world in his brain. His thoughts and feelings aren’t obvious, but they matter, and we have to not only help him adapt, but we need to teach him to adapt, and make some adaptations for him as well. Medication is a consideration, but if the problem is mostly happening at school, I’m hesitant to biochemically change his behaviors and/or personality when there’s other options to approach first.

Think happy thoughts for us. Not only is our house not sold yet — four weeks and not one showing — which makes me discouraged and sad, being stuck in a place where we have no friends and don’t want to live anymore (for new readers, we’ve only lived here about 14 mths and we have no close family here either) but now our son is showing signs of major regression and I’m just seconds away from developing a tic again in my eye. It’s not about me, and I don’t want to make it about me, but we could really use a break. BB needs help, and he needs love and acceptance. We can shower him with love, but I can’t buy him the acceptance and the help relies on others.

I hate saying “my son has a disability” but yesterday’s issues really drove it home. Whatever else is going on in our life (such as planning a move that we’d hoped to still make this year) can’t be the focus. BB has to be the focus. Kind of a kick in the pants, and maybe we needed it.

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.

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.

 

First, despite being down a child due to the one still living out-of-state for college, it was an excellent Christmas.

I had worries — what happens if it gets too loud, too crazy, he doesn’t get the cellphone he’s been asking for, the list goes on. We had realities — he needed time to decompress, one part of his favorite gift had a minor break the night of Christmas (when he insisted that this kit go with us to see family, despite us telling him not to take it), he got over the cellphone even though his cousin the same age got one (despite us telling him ten-year-olds don’t need cellphones), he had meltdowns during both the decoration of the gingerbread house and the gingerbread cookies (maybe the ginger smell gets to him?) and he cried more than once that his oldest sister wasn’t with us. But, he made it through and nothing was that serious.

The good things, the things that went above and beyond ‘normal’ Christmas fun, negated the problems. He spent hours playing tag in the dark with his cousins on Christmas night, he played basketball with them, without a problem, and when his sister spent the night (without anyone really inviting him), he came home without a problem or even a mention. But the biggest deal? The thing that made this Christmas absolutely most amazing? SNOW.

We’d been hearing for days that it would snow late Christmas night. A lot of people said that it wouldn’t really happen, it’d be a sprinkling to not get excited about, and how ridiculous it was to want it to snow. Still, we wanted it to snow and hoped the weatherman would be right. Before we moved from the west coast, we had to drive an hour or so to get to the snow, and we’d get to the beautiful mountains only to see that every other family within three hours was there right along with us. In your square foot of clean white untrodden snow, you could play but if you had to use a restroom, get your car out of the rut in the snowbank or want to avoid ambulances because too many people decided fast-food lunch trays were credible, safe sledding devices, you were out of luck. We went to bed close to midnight, and I woke every hour to see if it was snowing. Around 4:30, we’d gotten a couple of inches, so I woke BB up as promised. He wouldn’t go past the front porch — I think the sheer cold caught him off-guard. I took a few pictures and went back to bed. I was woken up around 8am with a loud HECK YEAH from dh. Snow, and not just a little. Inches and inches, and it was still falling. We woke up BB and our older son (dd was still at her cousin’s) and took pictures at the dogs’ first foray in the snow. Hilarious. They loved it, and didn’t want to come back in. We bundled BB up as much as he’d let us and he ran out to jump into the snow. Dad went to get snow gear out of storage at the in-laws and it was four hours before BB would come inside; even then, it was only to get some lunch. Another couple of hours of snow play followed, where we built three full-size snow forts and a slide, had numerous snowball wars, and built a life-sized snowman, complete with carrot nose. He then pooped-out, made a bed in front of the fireplace, pulled out his favorite gift (the magic kit) and put on Despicable Me. The snow’s still around, three days later, but he has no interest in going back out. He just wanted to be sure we put a scoop of snow in the freezer to save as evidence of our awesome day. Works for me, a lot of good memories from that one day.

We’re noticing that the “I must be in charge” trait is coming out really heavily. It’s hard to deal with some days. I can say “Please wait five minutes until I get <xxx> done, and then I’ll make your snack,” and he barrels on about the snack, as though I’ve not even spoken. “Mom, want to hear a joke?” “Sure! Let me finish dressing and I’ll be right out.” But he has other ideas, he’s telling me through the door. “Can I read this story to you?” “Yes, as soon as I’m off the phone.” As fast as I can finish my sentence, he’s reading the story to me, like he never heard me. I can have conversation after conversation with him about how friendships/discussions are two-way. One talks, then the other talks. One chooses the activity, then the next chooses the activity. And I daily teach him that he can’t tell me when I can get up and get a drink, when I can start dinner, or what I’m putting on the TV. Yet we go on and on with him insisting he’s in charge, having such a hard time dealing with the fact that the world doesn’t operate on his plans, and that other people have wants and needs and their own minds. Such a test of my patience, though he’s not being malicious. I can’t be mad when he often just wants to sit with me, cuddle with me, or read with me. It’s just something we need to work on, but if only there was a therapy or something available that a) worked, and b) was available to people with jobs and other kids to provide for as well.

Come the new year, aka the closest we’ll get to normalcy, we’re going to start working with the RDI program. I’ve got a couple of excellent other books to read as well, including “Lost at School,” and I hope to put some of what I learn to use, adding to my homegrown degree in Autism. (That should probably come before my web/blog design certification studies and photography and Photoshop classes. Oh, and the jewelry I need to get to the consignment store.)

Today, we ventured out of our snow-covered city and visited a local zoo. What a blast! BB was upset at first, said he didn’t want to be there (he’d forgotten his gum at home and that constituted enough reason for him to hate the outing) and that he’d rather be at the movies. (However, the movies wouldn’t work as the only one they wanted to see showed too late this evening to make the trek home during this holiday-traffic week that time of night.) He got over his issues soon enough though, and we had a great time. As always, the second he got there, he was hungry. And thirsty. And hungry again an hour later. I almost spend more on food when we got anywhere than I do on tickets! Tomorrow is going to be a ‘stay at home’ day, where he gets to decompress before family visits on New Year’s Eve, and any partying we may do that evening. I think we’ll make cookies, and I mean we loosely — we’ll start, and I’ll end up finishing them beyond the first tray.

Happy New Year’s to all!

I probably should have posted this already, but the whole church restraining order got to me too much. But, now that I’ve ranted, here’s why I haven’t updated recently. I was on a business trip to NYC last week, and I had a blast. (Should I feel guilty? I left dh home with all four kids and all the associated issues, and there was a day I didn’t even call home!)

I was a bit worried about it initially. My husband leaves for work very early, so it would require my older two teens getting the younger two up each morning and out the door. Ds wakes up early, and he is high-maintenance all morning long. Once he’s at school, the coast is clear but if his routine is disturbed on his way out the door, all hell can break loose. I had to leave explicit instructions on things — for example, how to make his lunch. A paper bag with his name on it. Two juice boxes, only of a certain flavor, not the other kinds, leave those for dd. Use four separate baggies, and fill three with snacks of specific varieties, rotating and putting just so much in each. The sandwich is white/wheat bread with a bunch of turkey and mustard, no cheese. Use the Pampered Chef sandwich cutter to cut off the crusts and make it like an Uncrustable. Put one juicebox and all the food in a bag. Fold over three times. Put a staple in each corner, with room in the middle for him to tear the bag open. Phew. And that’s just lunch.

I pre-made his pancakes and cookies before I left, so breakfast is simply re-heating. Cut them before you put on syrup, stacked perfectly together. His “coffee” (chocolate almond milk) must be in a certain cup at the same time.

Dh picked him up from school daily, and they had fun evenings — ds got homework done early in the week, and they played Guitar Hero a lot, played tetherball, and things went well. He did try to escape his therapy on Tuesday, and Friday was rough, resulting in him breaking a special ceramic box his sister had made him (painted with puzzle pieces and an autism ribbon) a couple of years ago, which I’m sure hurt her feelings. He loved that box, so I know he had to be pretty mad for that to happen. I woke him up Friday night when I returned, and though he was half-asleep, he smiled so big, it was definitely worth it.

The weekend went well, and he’s been oh so compliant, it’s almost scary. His attention span is still short, but when he finds something he really wants to do, he can focus for a longer period of time. He’s fascinated with building block towers and playing with rubber bugs lately, and I am SO thrilled. Anything new, anything with imagination, I’ll gladly step over piles of toys all over my house. Gladly. That giggle? Best sound in the world, ever.


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