Autism Watch: 2007

Posts Tagged ‘anxiety

It’s day 4, and we almost didn’t make it to school this morning. After yesterday’s headache, he was ‘off’ all night. Edgy, easily irritated and seemed unable to focus on one thing for too long. At bed time, we had a major meltdown on our hands. Apparently his service dog hasn’t slept well the last two nights and it’s keeping BB up at night. I knew about this, but I didn’t know it was to the point of near hysteria that he’d have a third night like this and keep BB up again. After 15 minutes of him yelling and crying, hitting himself and us having to stop him and try to talk him down, he decided to listen to some of our suggestions for keeping his dog happy at night, thereby allowing him to sleep.

It took a while, but with some furniture rearranging, we moved the carpet over to one side and angled BB’s bed so that the service doing, who we’ll call “C,” was only able to roam one side of the room, and with the carpet there, BB wouldn’t be able to hear his nails on the hardwood floor. C’s bed was over there, and BB could still be near him without the noise. We then watched Dragon Ball Z Kai together (not the world’s best show, but he loves it) and he went to sleep, 30 minutes later than normal, but it was barely dark out. He insists on being in bed no later than 8:30, some nights as early as 8:20, so I was worried this would upset his sleeping pattern but he seemed fine.

Fast forward to 6:15am, when I wake him for school, and I hear him moaning as I walk down the hall. He said he’d woken up about 30 minutes prior with a ‘super bad’ headache. I get him a pain reliever immediately, massage his head, offer him water, and do all I can to get him to be willing to go to school. That’s where I felt like a really bad mom, because I don’t want to leave my bed when I have a migraine, yet the schools out here have the world’s most ridiculous policy for attendance. It doesn’t conform with the state’s policy, so we’ve pushed it a bit as the state allows for 10 days of unexcused absences, and four that you have a doctor’s note for, which is fair — I really do believe kids need to get to school and it’s important to make rules — but what’s not fair is that our school starts threatening truancy at day four and makes you attend an attendance meeting. You quote disability laws and they state that we have to have a document on file. Uhm, I think the IEP and medical diagnosis of autism and migraines should suffice, yes? But no, we have to have a note each year on file and even then, they want to make sure we’re ‘being truthful’ and not taking advantage of that. So you end up taking your child to a doctor for a mild cold that’s given them a temp of 100, not enough for a doctor to do anything more than write a note that you were there and enough for you to pay the bill and expose your child and yourself to even worse illnesses.

I digress.

I finally got him up and moving this morning and got him out the door..a few minutes late and with him being oh so slow that it was really hard not pushing him to move faster. After all, tardies count against the 10! We have to weigh the balance between being a mom not making your sick child go somewhere that he’ll only be in pain, and the school hassling you. I partially think it’s the area — we’re ex-homeschoolers and we believe that while schools are important, they’re run by humans and parents have the utmost choice, and people locally tend to believe what school staff says without question. I also think that I’m just burned out on years of expectations that are unfair. He’s sick, he shouldn’t be at school where it’s only going to make him worse. If school is making him this anxious, it’s not up to me to just continuing to increase his medication, but to them to find out what they can do to decrease the anxiety.

So I sit and wait for them to call and give me an update. I’ve already spoken with the nurse first thing, but it’s up to the teacher to let him go to the office if his head hurts, and if she doesn’t let him..well, I’ll be there in the office first thing, but that won’t fix the day for him. For him, when he has a problem with something once, he’s put off from ever trying it again. Let’s just say that the day that It’s a Small World at Disneyland broke and we were ‘trapped’ for 15 minutes, five years ago, assured that we’ll never ride it again. I liked that ride.

For those of you dealing with anxiety, what do you do? BB’s headaches were far less frequent over the summer, in the environment without bright lights, too much noise and stress. Now that he’s back at school, we can see him getting stressed and anxious, and we feel the headaches are a side-effect. We want to try something to help — biomedical is the first goal, followed by medication but only if absolutely necessary. How do you handle autism and anxiety? Where do you see it cause the most problems?

Advertisements

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!

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.

This morning was a good one — planned out, scheduled well, in his routine, and he did everything without argument. Then we get to school.

Two of his best friends run up to the meet him at the gate. Not sure who was more excited about that, him or me. I breathe a huge sigh of relief and am darn near tear-y when I see this happen. They play, they wrestle, they run…and he laughs. Ahhhh, I love that sound.

Bell rings. Line up time. A little girl is a bit pushy with him on something, and he calls her a brat. Red flag goes up. I wait until the line goes into the school, and things look okay. I won’t be here when he gets home today, so I remind him and get a hug and kiss. (I know, I know, in the classroom is a no-no…”Mom, the kids will see!”) He walks back to his desk, and then it starts. “My water bottle is gone! The darn cunstodians threw it away AGAIN.” He proceeds to run out the door, I catch him, hold him, he sobs. His little body shakes because he’s so sad he doesn’t have a water bottle now. And bear in mind, it’s a generic Costco water bottle, nothing that I don’t have 50 more of in the fridge. The teacher comes out, coaxes him in and shows him that it is indeed there on the desk, just pushed over onto the girl’s side next to him. Phew. I see relief, I feel the tension go…but not completely. But I had to go, it’s the teacher’s territory and I don’t want to impede routine, and I think he’ll calm down better with me gone. That doesn’t make leaving him that way any easier though.


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 34 other followers

Twitter Updates

Error: Twitter did not respond. Please wait a few minutes and refresh this page.


  • Kim: amen!!!!!!!! Thank you.------ Mom of 5 year old verbal (with speech apraxia), self injurious autistic son.
  • Emily: Thank you so much. I share your pain and am glad to know I'm not alone in my struggles with my very verbal autistic spectrum son.
  • Meet Julia, an Autistic Girl in a Sesame Street world | American Badass Activists: […] Apocalypse. That, or demonized in news and online rants, especially after a campus mass murder or a plane-halting meltdown . . . . So this b
Advertisements