Traveling Dads and Broken Promises

My husband’s in another phase of traveling for his job. I don’t mind — he’s got a good job and he does it well, and I have to admit I like sitting up in bed with the light on late, not having to make a real dinner, and pretty much just doing things however. But I do miss him, and so does BB. (For any new readers, BB is Barnacle Boy, a nickname from when little guy was so firmly attached to me due to our attachment parenting style, we called him the barnacle.) When he hears the door, I get “Daddy?” “No, Honey, remember? Daddy’s traveling. He’ll come home on Friday.”  “Oh.”

So we go about our regular business of computer games, snack, homework, more computer games, and dinner. Shower, flossing, teeth brushing and some TV. Nail trimming. Hair brushing. And what would regular be without some upset? Tonight’s came from me ridiculously (not) saying no to him playing some violent video game. (It turned out though that we don’t even own the game and you can’t play it on the computer, so that would have made it easier HAD I KNOWN THAT.)  The homework was shoved on the floor, pencil went flying, and the sobbing ensued. Crash. Bang. Boom. The sounds continued as he stumped up the stairs and into his room. I was able to fix it, as much as you can at that point, by promising to look at the game next time at the store, so I can see for myself if it is violent or not, instead of basing my decision on what a few people have told me. Sniff.

Now he’s snuggling into his bed. He insisted on sleeping in my room, in a little bed he made on the floor. And you know what THAT means. It means the dogs are sleeping in here, too. I wonder if I’ll make it through the night without waking up to the Yorkie on my pillow.

Not sure if it was a smart idea or not to agree, but his routine’s already out of whack, and for years, he’s slept in here when Dad’s traveling. Not sure which decision would be worse…..

And when we bought him the monthly package on Roblox, he promised us he wouldn’t throw fits over certain things. Ha. Gotta work on that one.

Stupid Home Showing People!

You hear that around my house a lot lately. Our house is still on the market (I know, I say ’still’ like it’s been a long time, when in reality it’s only been a month) and we thankfully still have people coming to see it. This makes me and my husband happy. A happy homeseller is a happy home. But, for BB? Not so much. Hence, the “Stupid home showing people! I don’t want them coming!”

We’ve tried, over and over, to explain that no one will buy the house without seeing it, so we need people to come.

Still, this morning, again “Stupid home showing people!” grumble grumble grumble

Such is life when your house is on the market and your child with autism doesn’t like the interruption to his domain.

IEP Success!

I think no matter what your relationship with your school is like, an IEP still makes you sigh. I’m not sure if it’s the thought that parents of ‘normal’ kids don’t have to do this; maybe it’s the worry that some surprise will pop up. Or, maybe it’s just the exhaustion of having to deal with so much.

To be clear, our school admin is amazing. We don’t have to fight for things, they ‘get’ our son, and he’s in good hands. But, it’s still an IEP, and dh couldn’t come this time due to an off-site work thing. (Otherwise known as some work-related golf tournament. Really.) But, I wasn’ t worried, I knew there’d be no surprises or anything bad, and I don’t sign IEPs in the meeting anyway. You always need time to go home, review with a clear head, chew on it some, and draft any changes you may want. Or, you realize that after a day or so, you’re still comfortable with it and haven’t thought of anything that’s not on there, and you sign it. I guess that’s my biggest advice, being an IEP veteran now — don’t sign it there, don’t let them rush you, and take your time to be sure it’s all-inclusive so you’re not calling for another IEP right away.

The service dog is working out perfectly. We continue to see positive changes with the little guy, and the dog has melded with our family like he’s always been here. It also means that when I do Pilates, he thinks there’s something wrong, as I’m laying on the floor, and he stands there, leaning onto me and checking me out, intensely worried. Makes for an interesting Pilates session. (Then there’s the Yorkie, who seems me as available to pet, snuggle and lick since I’m defenseless.) Gotta love dogs.

Sad to hear about all the brouhaha with the Wakefield paper — I don’t agree, but I can’t focus my life on autism 24/7. I still block quite a bit on Facebook, it’s just too much. I do better getting away with it and dealing with it more on my terms. My son is such a success story, and I need to remember that and put him first instead of dealing with making change. Selfish, eh, I suppose someone could say so but I can live with that.

Enjoy your weekend!

Fear and Autism in California

I don’t know about other kids with autism, but mine, when he gets scared, he gets really, really scared. Even when the situation is resolved, he’s still scared. He’s still scared days later when he thinks about it. If he’s not pushed, his fear can get to the point where he goes into complete denial of the situation that was fearful, and won’t ever go near it again. Sometimes it’s a big deal, sometimes not. Today? Big.

Since he got his service dog, we work daily on fine-tuning their relationship. The dog is amazing, and is the sweetest animal ever; he came to us trained, but we need the dog to realize BB’s in charge, and for BB to take charge and be in command. BB just has this lovey sweet high-pitched voice with the dog. It’s cute, but it doesn’t inspire anyone or anything to take him seriously. The dog is also 89 pounds of pure heart, but when he hasn’t taken a walk in a few hours, he’s 89 pounds of pure enthusiastic energy, making it hard for a 65 pound boy to walk. Tonight he had a bit of a scare, as he led the dog one direction, then changed his mind last-minute, and as a result, got a bit too close to the street for the comfort of a car that was going too fast through the neighborhood. All that added up to a freaked out little boy afraid to take his dog for a walk ever again.

In stepped big brother and his friend to complete the walk (as we walk the little terrier at the same time) and dh spent the next 20 minutes cuddled with a crying, sad BB on the couch, rebuilding his self-esteem and confidence. Attacked soon, the problem dissipatd, but BB has yet to take the dog back out. In another half-hour or so, we’ll try again. The dog loves BB, and there’s been so many positives to having him, so we need to remind BB of that. I’ll let you know tomorrow what happened.

Of Dogs and Bathroom Visits

Such an auspicious title!

The service dog is amazing. We’re fine-tuning him listening appropriately to BB, but in the almost four weeks since the guardian angel arrived, BB has only had one incidence of getting up at night with a bad dream, sleepwalk, night terror or anything else bad in the dark. Nothing sort of miraculous. And as a bonus? We’ve become dog people. We take them for walks, buy them cute toys, and carry the Yorkie around as though she’s an infant. The service dog, C, is 89 pounds. He can’t be carried — which is hilarious and definitely a hitch when you try to take him for a car ride or go out to the RV during open houses and house showings. He weighs considerably more than BB, so sometimes walking is entertaining, but we’ve come a long way, and having a service dog is a blessing I can’t put into words.

As for bathroom visits, kids don’t believe you when you tell them that using the restroom will make them feel better. Sure, Mom/Dad, whatever…just stop talking about that. BB was home from school today for an extreme stomachache. Finally, around 3pm, he announced he was making *the* potty trip. He never ceases to amaze us with his vocabulary and conversations, but he still had me laughing and sort of shocked with his story about feeling relieved when he was done. I think that’s one thing he’ll always believe me about now…using the restroom will make him feel better. I think he’ll be going to school tomorrow. And I’ll work, keep the house clean for more house showings, and pray it happens quickly. I  We need to get this moving show on the road.

I’m Back….I Think?

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!

Wow, where does the time go?

I was going to say “holy crap,” but I didn’t think that was the most auspicious post title.  And, as we all know, I’m all about being “auspicious.”

It’s been a while now. It’s been not necessarily the easiest “while,” but what the heck, we all have these times.

It’s not been the worst while either. Just busy. Confused yet?

As I’ve mentioned, we’re planning a cross-country move within the next couple of months. We’re planning on dragging everyone and everything (that I don’t throw away) to a small guest house in the Carolinas to live until we decide what to do next. Build our dream house on our land? (Which we already bought.) Buy a pre-existing home and save some time? It’s a lot to ponder. I literally wake up nightly, sometimes several times, wondering if we’re doing the right thing, while knowing that giving my kids time to know my husband’s side of the family, cousins their age, real space, and calmness is the right thing. Real peace. But real peace takes time.

We’re about to hang our realtor sign. BB (Barnacle Boy, for any new readers) is enjoying his Christmas vacation. He’s much less anxious not having to worry about how his daily social events at school will play out, and quite honestly, so am I. He’s loving the holidays — all the gifts, all the days where he can hang out in “softs” (lounge pants) until bedtime, and he doesn’t have to worry about social issues. And so am I! I took almost two weeks off to hang with the family. The older two are coming and going intermittently with their work/social schedules, but we had a fantastic Christmas day — friends stopped by, dinner was good, and Santa pleased everyone. (And our bank account is a-okay. Planning ahead really is key for stress relief.)

With the real estate sign comes a tremendous amount of packing. I don’t think it’ll affect BB too much. He survived the re-painting of his room without a hitch. He also survived me being gone for 9 days as I stayed in the South with the in-laws to help my sister-in-law recuperate from ankle surgery. (I feel guilty almost saying I helped; I did help, but I also enjoyed — the weather, the company, the bonding, and in the end, the relaxation. Dh was home with all four kids by himself. Welcome to my world!) I do wonder how he’ll do when I can’t pack Every. Little. Thing. in the RV, and then the guest house while we make plans on what to do next. Then again, I hope he’ll find a new interest in running around outside — and that he’ll make friends in school so he can hang out with them.

Tomorrow, we’re taking him to the restaurant our kids work at for dinner. He’s looking forward to clam chowder, and I’m looking forward to getting out of the house. We did some quick shopping yesterday (Tar-jay), but otherwise, I haven’t really been out of the house since Dec. 23. And it was a wonderful night, I must say. BB and the rest of us toured a neighborhood full of Christmas lights and music and noise and crowds, and he didn’t flip! In fact, he even posed for a picture…though he did pull the hat over his eyes. Can’t have everything, right?

He did lose laptop priveleges today. We have U-verse, and while we were promised no slowness because “you’ll have your own fiber-optic lines that you don’t share,” we really didn’t st0p to think that those lines all originate in the same place, which is shared by a ton of neighbors. If my neighbors were non-judgmental (aka nice) enough to talk to, I’d ask if they experience the same slowness we do at peak hours of the day, but I can surmise they are if we are. We aren’t big downloaders, so someone out there is a bandwidth hog. Anyway, he was bugged by the slowness and was yelling at his laptop enough to bug me. Laptop privs gone till tomorrow. But, he didn’t throw the laptop, so I’ll call it a success!    Kidding, but it definitely could have been worse. Working on dealing with impatience, not yelling, and chewing with your mouth closed. Always something, eh?

Happy holidays to everyone! For the holidays, I gave myself a break from online visitations, but I miss it. I should be around more often, if anyone misses me. Happy New Year!

Birthday Worries

This last week, we finally decided what to do for BB’s birthday. He had grand plans, but with an impending cross-country move, we’re watching our budget. We also aren’t sure he’ll have enough kids come to make a pizza-parlor/game type of party, so we decided to go back to our standby, a cool bouncer in the front yard with food of his choice and a sundae bar for dessert, along with cake. The theme is Army, and I’ve got all kinds of decoration/game ideas, though with his temperament, I may have to back out of the Nerf gun/marshmallow shooter ideas for fear of someone flipping out with a bullet or marshmallow in the eye.

But, to the point…I sent invitations to the entire class on Wednesday. All 20+ kids, and asked for RSVP. (I know that RSVPs aren’t foolproof, but it’ll at least give us an idea if kids are coming and how much food to buy.)

Chirp. Chirp. That’s the crickets as we wait for the phone to ring.

I know there’s a major holiday in a few days, but if I’d waited to send out invitations after Thanksgiving break, we probably wouldn’t have given them enough time.

I know people are busy, but I still can’t help but worry….what do I do if he has few to no kids? (Okay, wait, I know he’s got one coming at least.)

This is an issue a child shouldn’t have, worrying if he’s going to have birthday party guests to celebrate with.

I have to stop worrying and just keep planning. Camouflage decorations, little Army men all over the yard, and face painting to match the theme. No goodie bags of cheesy toys and candy no one wants, but some homemade cookies in some Army-ish shape I have yet to decide upon. Maybe some game prizes, not sure yet.

How does everyone else handle birthday issues?

Another Dentist Appointment Completed

Today little dude had what is hopefully his last ‘work’ appointment…you know, where work outside of the normal cleaning and checkup gets done. I had to do this one on my own, since I “HAD THE DAY OFF.” Notice those words in caps -  apparently they mean that today is just a fun day, you know, where you have fun all day long and nothing makes you tired or keeps you busy. But anyway, dh didn’t have the day off and we figured since this wasn’t a root canal, I was good to go handling it on my own. Sounds good in theory, right?

Happily, this is a situation where the theory was in keeping with the reality. Barnacle Boy laid down, let the nitrous do its thing, and cracked us all up, even throughout the novocaine shots around the two teeth that were being filled. He even told the dental assistant she was sort of pretty, then said “I can’t believe I just said that.” His speech went really quick, he was thinking fast and the filter was entirely 100% off. SO cute.

(If you don’t believe in using nitrous on your autistic child, I respect that decision but understand that we chose to use the nitrous for our own reasons, so please respect your decision as well, without the assumption that we aren’t educated or didn’t research. Thank you. And if you don’t care what I do, kudos, and I apologize for the off-topic interruption!)

Once we got home, BB laid around for all of an hour, devoured a big bowl of vanilla ice cream, then literally ran off to make animated cartoons on his computer. He just finished dinner with us, where he ate an entire turkey bratwurst and a handful of tater tots. Now he’s back upstairs animating. A new hobby!

In a few months, when we move, we’ll have to choose a new dentist. Not necessarily looking forward to it, though our current dentist has offered to refer us to dentists in our new area and fwd on records. We’ve learned that when you choose a dentist, ask a lot of questions. Decide what you’re comfortable with and what you can’t live with. Check out not only if they accept your insurance, but try to gauge how willing they are to work with them on your behalf. Add in autism and you have to find out what accommodations they’ll make, how quiet/loud the office is, how trained the staff is to work with us, and even things like wait time. I’m tired just thinking about it..and I have to do this with a pediatrician, a neurologist, a family practitioner and the dentist.

 

Sharing in the Autism Community: Really?

When my son was dx’d initially, online communities saved me. My husband was in serious denial, and I didn’t know anyone offline that had any experience with autism, so I spent hours seeking out help, support, information, anything. I was one of those people who knew nothing about ASDs, as even with all my son’s issues, we assumed that at worst, we were dealing with Sensory Integration Disorder, so we started this with absolutely no clue. I was desperate to find people who knew what we were dealing with and could give us some guidance, and email groups were it.

Since then, there have been numerous times I’d turn to the online communities for help — referrals to providers, opinions on therapies, suggestions on handling situations, or just “I know how you feel.”

But this week? I feel like the time has come for me to step away. I want to stay on top of what’s going on in the community at large, such as research, news, events, etc., but I can do that without being actively involved in email groups. I unsubbed from five groups yesterday, and while I felt just a tinge of sadness, I was overwhelmingly relieved. I felt, and feel, enormously liberated, and I am even more glad I did it today than yesterday.

Lots of things contributed to the decision — not just one event, though it was one email that finally pushed me off the fence. Over the years, I’ve seen a lot of emails that make me shake my head. I can participate by stating something that’s going on and get no response, and someone else two minutes later can say almost the same thing and get nine sympathetic responses. That’s the nature of the online community, as timing is everything and people respond when they’re available, but it’s disheartening when you feel invisible. I’ve seen new members get jumped on for asking basic questions. A lot of people ask about the flu vaccines; some of those people are welcomed while others are borderline attacked or get posts implying they’re simply not educated for even considering the vaccine. Some people want to debate when all you want is information or share your opinion on someone else’s. Basically, any response you make is fair game for attack anymore, and it didn’t use to be this way. I’m not sure what’s going on in the autism community, but the divisiveness that used to be focused on biomedical vs. traditional is growing. We as a community want the freedom to do what we want with our children, as in “How dare they try to make me vaccinate!!” but we turn on each other so quickly. I’ve mentioned it before, so I won’t digress but I wonder what it’ll be like in another six months. Where will parents of newly diagnosed children go then?

Don’t get me wrong — not every group is this way. There are wonderful people in the community who will still take the time to guide, support and give a virtual hug, but there are many people who will tell you you’re wrong, make assumptions about what you’ve said/done, and give you a virtual snub. Be careful what you share online. You can only explain your concerns or situations in so many words in the written form, and it can and will be open to interpretation by anyone that sees it. Responses can be harsh, even if you’re in the worst mood to deal with it. If someone has made a judgment about you, such as “not biomedical, not doing enough,” the responses you get will be tempered by that pre-formed opinion.

It’s like any other group, online or off. I’ve learned I just don’t have the time anymore to engage. I don’t want to read the arguments regarding what group to donate money to, I don’t want to read about how disgusted people are that others in the world dare to believe in a flu shot, and I can’t take one more whine from a previously stay-at-home-mom who just started getting IHSS a few months ago and is home all day alone while her kids are in school yet is peeved that IHSS rates are less. Or how we working moms get “respite” while we’re at work all day, yet it’s our tax contributions that are paying for respite for others. Life is stressful enough, I don’t need to have it added to and when I found myself hitting “delete” more than “read,” I know it’s time.

Don’t let my opinion sway you if you’ve never been in an online community and want to give it a shot. Really, they aren’t all bad. But, be cautious. Consider what you’re looking to get out of responding, and what you can live with. Be prepared for negativity, and don’t give identifiable details. I used to answer just to join in, then I realized how much time I was wasting — I work, I have a job and my time is at a premium, so if I want to join in a conversation, I have other opportunities with people I actually know and trust. That’s the problem with the online world, it’s easy to feel a part of the group and easy to feel you can trust people because ‘it’s just words.’

I’m going to save my words now for my anonymous blogs, for my offline friends, and for personal emails between individuals. It’s truly liberating to realize how much time I’ve saved myself and how I no longer need that kind of communication. And I’m realizing that wisdom does come as you get older! Who knew I’d ever really believe that cliche.

Now I’m signing off to see if I can calm the little guy. He’s getting some serious anxiety over waiting on someone to arrive, and I need to help him work it off or he’s going to be an overstimulated bundle of nerves.