Warning: Humor alert!

I’m sorry I’ve been absent so much. It’s just that it’s been such a quiet (yay!) summer so far, I haven’t really had much to say. I’m working on a post about Reed’s new therapist, but it’s not ready yet, so while you wait, check out this hillarious joke that was sent to me on Myspace (thanks for the laugh, Darlene).

A guy is flying in a hot air balloon, and he’s lost. He lowers himself over a field and calls to a guy “Can you tell me where I am and where I’m headed?”“Sure. You’re at 41 degrees 2 minutes and 14 seconds North, 144 degrees 4 minute and 19 seconds East; you’re at an altitude of 762 meters above sea level, and right now you’re hovering, but you were on a vector of 234 degrees at 12 meters per second”“Amazing! Thanks! By the way, do you have Asperger’s Syndrome?”

“I do! How did you know that?”

“Because everything you said is true, it’s much more detail than I need, and you told me in a way that’s no use to me at all.”

“Huh. Are you a clinical psychologist?”

“I am, but how the heck did you know that??”

“You don’t know where you are. You don’t know where you’re going. You got where you are by blowing hot air. You put labels on people after asking a few questions, and you’re in exactly the same spot you were 5 minutes ago, but now, somehow, it’s my fault!

Just call me the Autism fairy

Lately, I’ve come to calling myself the Autism Fairy (like the tooth fairy, but without the tiara and I don’t give out money. Sorry.). It seems everywhere I go, I meet other parents or loved ones or friends of parents of kids on the spectrum. It seems like most of them are newly diagnosed and floundering a bit. You know, like I am was not too long ago. So it feels good to share with them all the progress Reed has made over the last year and a half. To suggest a few things that have worked so well for us recently. To point out my bright little sunshine of a boy playing interactively with the other kids at the playground.

 Owen and I were at a birthday party recently for one of his little friends (her birthday is the day after his). Because she has special needs herself, many of the party guests come from her EI class. My friend (the birthday girl’s mom) pointed out a mom and little girl on the far end of the park and mentioned that the little girl was recently diagnosed as autistic, on the classic autism end of the spectrum. She sort of hinted that it might be nice for her friend if I introduced myself, so Owen and I made a point of wandering their way. Owen jumped right in, not paying much attention to the girl, which seemed fine by her. The mom and I made casual conversation while watching them slide, and finally she made a comment about the diagnosis, to which I replied that I also had a child on the spectrum. She was intrigued and started asking questions. I explained how we came to have him tested and what we had done since then. She asked if we could recommend any doctors as she was unhappy with some of theirs. And then she asked about school. As I explained Reed’s school situation and the progress he’s made, her face brightened. Her eyes lit up like a kid on Christmas and you could practucally see the heavens open and the beam of light shine on her. I’m fairly certain I heard a chorus of angels coming from somewhere (but it might have just been the “Happy Birthday” song from the next party over). After a while, she packed up her daughter and they headed for home, but it felt good to give her some hope for the day. I know her daughter’s situation is different from Reed, but it didn’t matter. She needed to hear a success story. The doctors had been giving her statistics and predictions and they weren’t good. She needed to hear that sometimes, sometimes it turns out okay. That a kid who happens to have Autism can also have friends and excel in school and be brilliant and funny and adorable. Because they can.

 If this gets to be a regular thing, I may have to buy a tiara.

Just when I think things are settling down around here…

Reed has been doing so great at bedtime lately. We haven’t had any more incidents in a long time. We started a new sticker chart recently, with prizes scattered randomly throughout the chart. The ultimate payout is an expansion track pack for his train set. He was one sticker short of his first prize. I was sure we were home free for the week. So would anyone like to guess what he did? Huh? No takers, huh? Okay, I’ll just get on with it then.

He dumped out 13 pounds of sugar in Owen’s bedroom and then poured water over it. I had a brand new 10 pound bag of sugar in the cupboard and a nearly full 5 pound bag of powdered sugar. He poured them out all over Owen’s room, and then threw the packages out the window, as if that would somehow hide the evidence of his crime (he’s not exactly sneaky, now is he?). It took 6 moppings to get the stickiness of the floor. I had to disassemble Owen’s bed and drag the mattress outside to clean it. I’m still scrubbing sugar out of toys.

I was livid. I thought poor Heath was going to have a stroke. We came upstairs Saturday morning to find what looked like a blizzard in Owen’s bedroom (notice he never does this stuff in his own room where his own stuff will get messed up).

I didn’t even know what to do with him. We cancelled our “Daddy Adventure” for Sunday, and instead he sat around at Nana’s house doing nothing (still not much of a punishment but I really needed a break from him after that), while Owen and I went to the metropark and had a picnic without him.

 I was really starting to think we were getting a handle on this. I guess I was wrong.

Questions for the wise and pretty Autism Bloggers

I have been wrestling lately with the how’s and when’s of discussing Reed’s autism with him. My original intention was to wait until he asked and then sit him down and explain it to him. I assumed at the time that he would eventually recognize his difference and be curious about it (especially since he’s mainstreamed in school with and EA and soundfield). Lately, however, I’m doubting that decision. What if he’s noticed this, but hasn’t brought it up? What does it matter if he understands it at all?

 He’s heard me talk about autism a lot. He even helped me with my Autism Awareness Month scrapbook page (“Reed, do you like the black smudgy things or the white ones better?” “White.”). Yet, he didn’t ask. Does he not get it yet, or does he not care? I’m so confused.

So my questions are these:

  1. Does your child know they have autism?
  2. When did you tell your child they are autistic?
  3. Did they bring it up first, or did you?
  4. If you haven’t talked with your child yet (either because you don’t plan to or because they’re not ready yet), how/when do you plan to do it?

Your insights into these matters are always so helpful to me. You lovely ladies always seem to think these things through better than I do. I guess I’m still a little too new at this.

Holy crap! Where has the time gone?!?!?

So sorry! I never meant to be away so long (yeah, I know. You’ve heard that one before, lol). The time has gotten away from me this year. A massive update is in order. We shall start with the Little One.

 Owen had his surgery (technically named a Posterior Fossa Craniectomyapparently. Better known as Decompression) on February 15. He was off to a rocky start, as they had trouble stabilizing his oxygen levels under anesthesia. They finally got started an hour and a half late, and after almost two and a half hours, they were finished. He spent a day and a half in the PICU, where he looked so pathetic.

He spent a total of 5 days in the hospital, and was his usual bouncy self by the time we got home. His incision was 2 or 3 inches long and had 5 sutures.

I am sooooo glad we had the surgery done. Before surgery, he seemed like a pretty happy, well-adjusted kid. I was concerned that we were putting him through all this for nothing, but the neurosurgeon felt it was really necessary, so we went ahead with it. Now, he is like a different kid. He giggles all the time. He speaks in complete sentences. He is more coordinated. He still doesn’t sleep much, so I’m thinking the sleep apnea didn’t go away, but I can live with that. His occupational therapist did a Peabody just before and just after surgery so we could get a benchmark. Before surgery, his grasping (hand strength) was at the 35th percentile. His visual-motor skills (hand/eye coordination) were in the 17th percentile. After surgery, grasping is now in the 85th percentile and v-m is at the 25th! And that was at 1 week post-op. His neurosurgeon warned us that it takes a minimum of 6 weeks just to get back to baseline (where he started when he had the surgery)! I can only imagine how much better it will be in a few more weeks. I am dying to get him back in to the speech therapist for another eval, but I’m pretty sure the insurance won’t pay for it, so I guess I’ll just have to keep wondering.

And now on to the Big One: Reed is doing so awesome I hardly recognize him lately. He is a model student at school, at home, and pretty much everywhere he goes. We had our IEP meeting last week (I think I might be the only parent around here who LOVES those meetings, lol). He still qualifies for services under the Autism Spectrum Disorder (duh!) and Sensorineural Hearing Loss. Which means that he will get all the same stuff next year as he gets this year (one-to-one aide, keyboard for writing assignments, and FM sound-field mostly). They will work more on weaning him off his aide next year (she’s been doing a great job of that already but he’s not quite ready to give her up completely), with the goal of going solo by third grade. They are planning to keep him in the gifted program next year, since he’s doing so well there this year. We’re not sure yet whether he will have the same teacher/classroom, or move up to the next class (his class this year is a 1st/2nd class, so he could stay there as a 2nd grader or move over to the 2nd/3rd grade class). As tempting as it is to keep him in his comfort zone with the teacher who has done so well with him this year, I don’t want to hold him back if he would do better with the more challenging material. He is doing so much better with transitions lately, that I’m thinking I might be making too much of this anyway. I told the school to place him wherever they feel he is best suited. If he has trouble in the other class, we can always move him back. He has one class a day with the other teacher now and seems to like him. He’s never had any problems in there (although it helps that he goes to Mr. Paris’ class for Geography, his favorite subject). They will be retesting his reading this week, so I will let you know if there are any more developments in that department. He will also be taking the IOWA test just after Spring Break (who schedules these things?!?). It is his first standardized test, and I’m very interested to see how he’ll do. They’ve written into his IEP that he is allowed extra help and time for standardized tests, so I’m not particularly worried about that, but he doesn’t like oral testing in general, so I am a bit worried that he will refuse to answer any questions at all.

As far as social skills, this is the area he has most excelled in this year. I was concerned about how he would get along with the kids in the gifted program, but it turns out my concerns were unfounded. Reed is actually popular this year! He has actual friends, and not just “friends” (meaning every kid in the class). We went to movie night at school last night, and he had a steady stream of kids running up to him and giving him hugs (which he easily reciprocated) or high fives or just chatting for the entire hour we waited before the movie started. Some of these kids aren’t even in his class. A few were in his Kindergarten class last year, but some I’ve only seen around the halls and have no idea who they are. It seems like every time I walk through school with him, somebody greets him with “Hi Reed!” and a big wave or hug. Where did this social butterfly come from? He has really found his place in school this year. I am so pleased! If you could see my face right now, I am grinning as I type (and chuckling to myself as I look at Reed siting next to me playing video games on Daddy’s computer while sucking his thumb, so obviously he is still my Reed).

In other news: we got a new car! Hooray! It’s the nicest car we’ve ever owned, and I’m so excited about it. It’s a 2005 Kia Rio Cinco station wagon. It’s only a little over a year old and has 20,000 miles on it (we put almost 2,000 of them on it in the 3 weeks we’ve owned it, lol). I love having a station wagon again (my first car was a station wagon. I wasn’t exactly the coolest teenager, but man you could fit a lot of people and their stuff in there!). No more struggling with the stroller. No more cramming the wagon in the front passenger seat (it didn’t go into either trunk before).

I guess that’s about it for us. We don’t generally lead very exciting lives, so even though it’s been months since I updated, there’s really not much to tell. I’m slowly getting caught up on reading all my favorite blogs, and have been scrapbooking like crazy now that Heath has built me a new computer. You can bet you’ll be seeing a lot of scrapbook pages on here, lol. In fact, I’m running out of pictures to scrap, so if you’d like some scrapbook pages made, feel free to email me. Scrapping is my stress-reliever and I love doing it. =]

First hand understanding

Heath and I watched a movie the other night, Mozart and the Whale. It was really interesting. It gave me a lot of hope for Reed’s future. After all, it’s about a couple of Aspies who lead productive, fairly happy lives. They work jobs, live on their own, and fall in love. It also very accurately portrayed many of his struggles. When the movie was over, Heath and I talked well into the night about it. And we came to a startling conclusion: We are both probably on the spectrum ourselves.

My beloved husband has some serious social deficiencies. We often joke about how he doesn’t “play well with others”. Despite his best efforts, he has a way of alienating people, rather than relating to them. Even after 8.5 years together, I don’t always get him. He struggled in school, partly with the social interactions, but also quite a bit with the academics. He has a knack for numbers (although not to the extent of Josh Hartnet’s character in the movie), but struggles with reading and writing (the grammar and composition, not the actual mechanics of it). When he gets frustrated, he pulls his hair. Hard. He gets really agitated if things don’t go the way he scheduled them.

I also have some trouble with social interaction. It wasn’t until I was a teenager that I started to be able to relate and interact with people comfortably. I am still very self conscious, because I cannot guess how people perceive me. I am excruciatingly uncomfortable with eye contact. I read this post a while back, and was nearly jumping out of my chair, yelling “Yes! Exactly!” As a child, I used to rock when I was concentrating. It helped me to focus through the noise in the house. I would sit to do my homework, and rock back and forth. It used to drive my mom nuts. “Sit still and finish your work. You’d be done by now if you’d quit squirming.” She meant well. She just didn’t understand that I Needed to rock in order to not hear my brother and sister running through the house, and my mom and dad talking, and the TV in the other room, and the garbage truck outside, and a thousand other noises catching my attention. I don’t rock anymore, but I do have this unconscious habit of twirling my foot in a circle. All. The. Time. It even drives me nuts, but I can’t stop. I nearly went insane the first week when my leg was in a cast and I couldn’t move my foot. My skin started to crawl, and I was really edgy. I still have trouble with eye contact, which could explain why I’ve been searching for a job for over a year, but still have no job. I try to make a conscious effort to make eye contact at least occasionally, but it’s hard, and I can’t do it while talking or I lose my train of thought.

So there you have it. All these little things that never meant anything to us until we knew that they weren’t “normal” (whatever the heck THAT is). I always thought everybody was like this. Aren’t they?

A token of my affection

We tried this once before, but it didn’t go so well. I decided to revive the old token economy after reevaluating what went wrong last time. It’s not going as well as it could, but it’s going much better than last time (which was before we had even a suggestion of Autism, and were operating under the diagnosis of ADHD) . I am optimistic that in a few weeks, he should have the hang of it, and it could be a really useful tool for us. I thought he might have some trouble accepting a new rule requiring him to “pay” for privileges he previously got for free, but so far that doesn’t seem to be his problem. His problem lies in the concept of delayed gratification. As soon as I give him a marble for something, he is anxious to cash it in for something. I keep trying to explain that he should hang on to at least a few of them to save up for the bigger privileges, like trips to the park, and ice cream. But he seems frantic to turn it back into something immediate.

Anybody else tried this system? Any tips? Success stories?

Acceptance

Finally a post that’s not all about me feeling sorry for myself. In fact, I plan to gloat a bit, LOL.

My family has always tried to be supportive of our struggles with Reed. They are sympathetic, but I don’t think they really “got it” if you know what I mean (and I’m betting you do). Because grandparents often see a different side of our kids, they often have a false impression of what parenting these kids entails. Reed has always been good as gold at Papa and Nana’s. They never have any problems with him when he comes to visit. Because of this, Nana is always ready to offer me lots of parenting advice. Things like “You just have to be consistent.” and “Make him responsible for cleaning up after himself and he won’t want to make such a mess anymore.” Um, yeah. ‘Cause I obviously never thought of trying that.

After today, however, I think she finally gets it.

As I mentioned a few posts ago, Reed loves my grandparents and was disappointed when his spring break visit was canceled. So, now that Papa is feeling better, Reed was invited to spend the weekend. After a difficult evening with him on Thursday, in which I threatened to not let him go at all if he couldn’t get himself under control, he finally settled down and went to sleep. He had a great day at school on Friday, and I was optimistic that the worst of this week was behind us. I dropped him off after OT, with dire warnings of what would happen if I got any unsatisfactory reports. We ran through our daily script of “How are you going to behave?” “Good.” “How good?” “The best kid ever.” We run through this script every morning before school, and it seemed appropriate under the circumstances. Owen and I headed home for a peaceful night. And there was much rejoicing. I got a call a few hours later that I had somehow forgotten to pack his pajamas. Reed had begged her to take him home to get them, but she convinced him to wear some sweats. She further appeased him by calling me and asking that I drop some pj’s off the next day. I assured him I would bring them over the following day, and he was happy. Crisis averted. Problem solved. He went to bed without a problem. In fact, he was pretty good most of the day, only having a brief problem when asked to clean up his toys just before I dropped by with the pajamas. I had a talk with him, and reminded him that if he couldn’t listen to Papa and Nana, he would be coming home. He promised me he would be on his best behavior, and I left, not wanting to infringe on his special weekend any more than necessary. Then at dinnertime, I got another call from Nana. She sounded like she might burst into tears at any moment. She informed me that she would be bringing him home as soon as she gathered up his things. I apologized profusely for his behavior, but tried to point out that this is just how he gets some days, and there’s not much you can do about it. 45 minutes later, he came bounding into the house. Turns out that she had asked him to help clean up some toys so he could get a bath in before bedtime. He refused, and when she insisted, he started throwing things and screaming. He threw a shoe, which knocked a painting off the wall. While she was retrieving the painting, he ran into the kitchen, and swiped everything off the table. By some miracle, her favorite crystal vase didn’t break, but it could have been bad. That was the final straw. She told him that he would have to go home, and he laughed in her face and refused to put on his shoes. That’s when she called me.

I know it’s really petty of me, but part of me is laughing inside. For all her advise, for all her opinions that there was something I wasn’t doing right, she got to see one of his nuclear-grade meltdowns first-hand. I feel some subliminal “I told you so”s are in order.

On being official

Grr, Blogger ate my post. I had a lovely though-provoking post all typed up and it has disappeared. I’m not sure I’ll be as elloquent the second time around, but here goes:

Reed had his appointment with the ASD neurology specialist this week, and he confirmed the school’s findings. We are now the proud(ish) parents of an Asperger’s child. This comes as no surprise, and I’m actually glad to have it over with. The neurologist declared that we were on top of things, and couldn’t suggest anything that we weren’t already doing. That felt nice. We will get an MRI done over the summer, but will wait until school is out before scheduling that. He also refered us to a research study on AS being done by the local university he’s affiliated with. I am still torn as to wether to sign Reed up for it or not. While the $3,000 or so in free testing is extremely tempting, it would require taking him off all meds for 3 weeks prior in order to be elligible. 3 weeks is a long time, and I’m just not sure we’re ready for that yet. I know medicating kids on the spectrum (or any kids for that matter) is contriversial, but it is what works for us right now. He functions so muchs better on his meds. He asks for his pill if I forget to offer it with breakfast. I asked him once why he wanted it when he reminded me. He answered simply, “It makes me not so much.” So there you have it. He is too much even for himself. When he can’t focus properly, he can’t put a filter on the world, and it overwhelms him. I’m not convinced it’s fair to anybody to deny him that. The answers the additional testing might provide, and the benefit to autism research are so hard to walk away from, though. At least I have some time to decide. We wouldn’t do anything until school is out anyway, so I’m thinking and praying on it hard.

I’m open to suggestions and advice. What would you do? You, my wonderful friends in cyberspace, are so much wiser than I in matters like this. Should we give it a try without the meds? After all, we might discover he can do just fine without them once he gets used it it. Or should we alow him his comfort zone for now?

Transitioning

This past week has been hard on Reed, and I’m a little afraid of what that will mean for our summer. Disregulation has become a way of life for my little man, stemming from many sources. First, it’s Spring Break. There is no Kindergarten. Despite my best efforts to follow his classroom schedule, it’s just not the same. Next on the list of culprits is the rescheduling of his visit to my grandparents. My grandparents love having him over, and were so excited to spend a few days of his spring break with him. Then, early Easter morning, my grandfather went into the hospital (he’s recently had surgery and developed a blood clot in his leg). No Papa= No Reed visit. He took it well, but I know he was disappointed, and it is contributing to his unrest this week. Then, we got a new roof. It was loud, it was unfamiliar, and he couldn’t even go out into the yard on some of the nicest days we’ve had this year. That was the final straw. He disintegrated, and hasn’t been the same since. Meltdown after meltdown have disrupted my day, the most recent of which involved kicking his little brother in the head because Owen was climbing onto his bed without removing his sandals first.

The solution to all this chaos would be to leave the house, but with gas prices as high as they are now, I can’t afford to drive anywhere if it’s not absolutely necessary. We were going to take a walk, but since Reed insisted on the longest possible lunch today, there wasn’t time before Owen’s nap.

I know I seem to complain a lot, but please don’t get me wrong. I’m merely frustrated because I am so new to this autism-parenting. I don’t know how to help him cope with his noisy, unpredictable life. I feel woefully unqualified to be the mom to this amazing little kid. I’m just looking for a little validation that even if he has a kicking, screaming, thrashing fit every day this week, that we’re still making progress. He has moved into the “I hate this” phase, which while somewhat infuriating, really feels great (as long as it’s not me he hates). He is learning to verbalize his frustrations. The chair is in his way? I’ll take “I hate this chair!” over throwing the chair through a window any day.

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