Nurses may be able to help families as they go through a process of accepting the diagnosis and seeking care for their children with autism.
Parents can go through emotional phases that are similar to phases of grieving someone’s death. Parents may go through shock, sadness, anger, disorganization, despair, and eventually reorganization and acceptance. Nurses can learn about therapy and treatment options to help support parents as they make decisions about care of their children with autism. Medication is often part of the treatment plan, and nurses can help parents by giving information and support to them.
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A new mania
Dec 22, 2008 by AnonymousWow, did Christmas ever sneak up on me this year! I thought I had a handle on things, but here it is, Christmas Eve-eve-eve, and Thomas turns six tomorrow. I should watch the old video of us opening presents with newborn Thomas nestled in the crook of his dad’s arm, looking around at the bright, decorated-for-Christmas world. I’ll not watch the video of me swollen to the size of a Dodge Caravan, limping to bathroom for the millionth time to check my staples. Despite my diligence, the incision became infected anyway and Thomas’ first few weeks at home were full of visitors – visiting nurses, that is.
The last week of school before Christmas break was so cold! School was cancelled on Friday which was a bummer for the kids in Thomas’ class; everyone missed out on their holiday parties. Thomas didn’t mind so much because he’s always apprehensive about anything out of the ordinary. I was especially disappointed that Hayley’s holiday sing would be cancelled, but I received an e-mail saying that it was rescheduled to 6:30 p.m. on Friday, so the whole family was able to go. Thomas had a really hard time sitting in the audience and being quiet, but nobody seemed to notice or care. After the kids finished singing, Santa Claus came in to hand out gifts to the preschool students. When it was Hayley’s turn, we asked if Thomas could talk to Santa too. Santa, as usual, was completely obliging, thereby saving us a hectic and stressful (and expensive, because they rob you for those pictures) trip to the mall on Sunday. Woo-hoo! I got a few pictures, none of them terrific, but it was good enough.
Thomas’ birthday party was on Saturday and up until the morning of, he was not into it. “I hate my birthday!” he was saying over and over. “There’ll be enough time for that when you’re a grown-up,” I answered. He understands that grown-ups don’t like getting older. Anyway, the morning of his party, he decided that he was excited and that he “loves his birthday.” Every time he says he hates something, I try to explain to him that he doesn’t really hate it, he just doesn’t know what to expect. He agrees with me on that. Now, the trick is to get him to say that he’s “a little worried” instead of “I hate it!”
Since tomorrow is his birthday, I was going to make him cupcakes or cake, whichever he preferred. He wants nothing. That’s what he said. Actually, I kind of think he’s just not a “cake person,” like me. I prefer fruit pies to cakes personally, but he wanted ice cream for dessert last night instead of leftover cake. Maybe we can make gingerbread men instead or something.
Santa has told me that he is indeed bringing Thomas the Lightning McQueen bicycle that he wants for Christmas. He’s also bringing the matching helmet and elbow pads, of course. I have already placed the old tricycles in the garage very quietly and nobody seemed to notice, so that’s really good. I’m just thinking about Thomas riding around the living room and dining room on Christmas morning, knocking things off shelves and the Christmas tree…bikes were always a popular Christmas present, but who can actually ride them in Chicago on Christmas Day? Which reminds me, Santa made the tires on the bike and didn’t put air in them…Mrs. Claus had better find the old bicycle pump in the garage.
So tomorrow is Thomas’ birthday, then we go to my mother-in-law’s on Christmas Eve for dinner and presents and then on Christmas, we’re going to my Uncle Bill’s house. Only thirty people are coming this year! It will be an intimate gathering for once, which will be good for Thomas. I think that some Christmases, there have been sixty or more people present which always seems more like Oktoberfest at the local fairgrounds than Christmas.
It has been so cold here that going outside with the kids – to play in the snow or just go for a walk – has been impossible. I can’t imagine another three months of this. It has to get better, right? Actually, I heard a meteorologist say that “they” expect December to be the coldest out of the winter months here in Chicago. Jonathan has been missing time at work not because of the bad economy but the rotten weather. I hate worrying about money and work right before the holidays, but it’s hard not to. We’re lucky he has a job at all. I’m still trying to find something I can do at home, but I’m discouraged by all of the scams out there.
Thomas has a “new mania,” like Mr. Toad in “The Wind in the Willows.” He loves playing with Jonathan’s PSP, which is a hand-held game console. We cannot get him to put this thing down. Like all of Thomas’ phases, we expect him to grow out of it, but it has been a real struggle trying to put time limits on this thing. I got it for Jonathan for Father’s Day a couple years ago, and it turns out that it was the worst decision I’ve ever made because when Thomas isn’t playing with it, Jonathan is. At any given moment, one of the men in my life is completely zoned out.
This will be my last post before Christmas, so I wish everyone a safe and happy holiday and a prosperous New Year. I especially mean the prosperous part.
Teacher's pet
Sep 12, 2008 by dankohnHere I sit, at my computer, without anybody to interrupt or deter me from my cathartic writing! That’s right; both Thomas and Hayley are at school and I have approximately one hour before I have to fetch Thomas and then Hayley. Hey, it’s better than a poke in the eye with a sharp stick, as my father-in-law used to say.
The waterpark last weekend was a success! The kids (and we, the parents) had a great time riding the slides and splashing around. Thomas liked the wavepool the best. He really enjoyed diving under the waves and letting them wash him ashore. The only problem with that was that he liked to float, face-down in the surf like a drowned person. He got more than a few concerned looks from lifeguards, but I waved their concern away and they saw Thomas stand up a few seconds later. Thomas got really upset at one point, actually. I was with him in the wavepool and Jonathan wanted to float down the Lazy River with Hayley in an inner tube. They needed help being shoved into the current and I told Thomas that I was going to help them. He didn’t hear me very well because he kept going underwater and was really upset when he couldn’t see me when he came up for air. He started crying, even! It’s such a comfort to know that he does worry when he can’t see Jonathan or me. It cuts down on our anxiety about him just wandering off.
Another issue we discovered while at the waterpark was that Thomas is not especially assertive with other children. There were kiddie slides that were being “monitored” by a lifeguard. Thomas stands in line okay with Jonathan or me, but when he’s in line by himself, he tends to dance around a bit. He was waiting in line for a turn to go down the snake slide and other kids were just going right in front of him. Jonathan was up at the top of the slide helping the kids go down, and he came down after a few turns and said, “Go up there and see! It’s Thunderdome! No rules! ‘Two man enter, one man leave!’” The lifeguard wasn’t especially strict with the whole turn-taking idea, so we explained to Thomas that when it’s his turn, he should go down and if another kid attempted to “cut” in line, he should say something. The fallout of this was that on the playground on Wednesday, after we picked Hayley up from preschool, he was pretty snippy with a little girl who wanted a turn on the teeter-totter. He said, “Hey! No, it’s my turn next!” She wasn’t really attempting to cut in line, but Thomas perceived her presence as such and was a little pushy about it. So we have to work on that. But the waterpark trip was a success and the kids enjoyed spending the night in a hotel. It was very romantic for me and Jonathan as well. I slept in one bed with Hayley and Jonathan slept in the other with Thomas. As usual, no making-out.
School is going great for both kids. I will be volunteering in Thomas’ classroom on Tuesdays now. I helped out this past Tuesday and I was concerned that Thomas might behave differently in class if I was there. Hayley came with, of course, and now has a little boyfriend. They kept holding hands and putting their arms around each other’s shoulders. We’re going to have to watch her, apparently from now until her wedding day, which she is already planning.
I did some filing for the teacher and cleaned up the coffee she spilled in the hallway on our way to the library. The teacher and library staff were so nice to Hayley, letting her participate and even check out a book although she’s not technically a student. The librarian thought that Thomas and Hayley were twins. I’ve been getting that a lot lately.
I was really worried that Thomas wouldn’t react well to my being in class. Jonathan and I explained to him that he would have to act like I wasn’t even there; just do what the teacher told him and that she is the boss when he’s at school, even if I’m there. To tell you the truth, I had a harder time ignoring Thomas! Every time he didn’t immediately follow the teacher’s instructions, I wanted to say, “Do what your teacher said! Go put your folder in the tray!” I had to stifle my own words on more than one occasion. Hopefully, I’ll get better at it. I know that his teacher appreciated my help and she said that I’ll be helping the kids with reading eventually, and learning computer programs. She told me that she feels like she’s known me forever, and I kind of feel the same way. We have a very easy manner between us. We discovered that she is exactly one week older than Jonathan and we were all at NIU together. Far out!
Oh yeah, the Focalin. We had to take Thomas off the Focalin because he developed a facial tic. He kept opening his mouth as if to yawn before speaking. It was becoming disturbing to us, so I called the doctor (who is out of the office this week) and the nurse called back to say “Stop the Focalin!” Remember how I said that the Focalin wasn’t doing anything for him? Well, it seems that it was. I’ve noticed an increase in rambunctious behavior and general nervous energy since stopping the meds. I was concerned about that. I thought the Focalin wasn’t helping because he was being better, but I didn’t notice until we stopped it. I’m supposed to call the doctor later today and tell them how he’s doing. I’m not sure what we can do now; all of those Ritalin-type medications carry the risk of developing a tic, and it appears as though Thomas is susceptible to that. We’ll see what they say, but he is still doing okay in school, I guess. I’m not going to ask the teacher until next week if she’s noticed a change in Thomas. If I tell her that he’s stopped the Focalin, she might be looking too hard for a behavior change and I’d rather wait until I see her again on Tuesday to mention it.
This weekend will be quiet. We’re doing nothing tomorrow and Sunday we’re going to what will most likely turn out to be an indoor BBQ if Hurricane Ike makes its way up to Chicago.
Compassion
Feb 22, 2008 by AnonymousThis past Tuesday’s meeting at school was disappointing. Not because of what anybody said, but because I really didn’t need to be there. The upshot was that there will be some additional testing and we’ll re-convene in May. Uh…that’s pretty much what was said at the conference late last month, but whatever. I’m glad I didn’t go to the trouble of finding someone to take care of Hayley while I went into school for this. The form-letter that they sent home said “childcare won’t be provided,” and I should “make other arrangements for my children.” If I had actually done that, I would have been steamed. I brought Hayley with and she was fine. She sat nicely in a little chair for the entire ten-minute duration of this thing.
Okay, a few other things were mentioned during this meeting…the school nurse was there, the speech and occupational therapists and Thomas’ teacher. The psychologist and assorted others who were supposed to attend didn’t show. The nurse said that Thomas wouldn’t allow her to test his hearing or vision last year, but he did fine with it this year and passed both tests satisfactorily. That saved me a difficult trip to the pediatric opthamologist and ear testing facility.
Something interesting that Thomas’ teacher does with him to get him to sit still during circle time (still his biggest challenge at school) is give him a bit of lotion to rub into his hands. His teacher has “magic lotion” (that’s what she called it until one of the other kids in class recognized it as the same lotion his mother keeps at home and pronounced that it is indeed “not magic” – the emperor that is their teacher has no clothes, so to speak) that smells like lavender which, for normal kids, is supposed to be a soothing scent. Nothing soothes Thomas much, except for the Clonidine. But this lotion seems to keep him occupied enough to sit still. The occupational therapist doesn’t even need to use the weighted vest that she had me sign a consent form for a couple weeks ago. Lotion is cool…much more socially acceptable. I’m excited about that.
I don’t want to seem like I’m reading too much into this meeting (which, as it turns out, included much more than I originally stated above), but the way that the school nurse was talking about the need for additional testing, it almost seemed like the school staff might be experiencing a bit of disagreement with the autism diagnosis. She asked several questions that led me to think about that. She wanted to know who diagnosed him, when he was diagnosed, if his current neurologist was actually the doctor who originally diagnosed him, if she could get a report from this doctor (good luck!), etc. The need for “new” testing came up, too. They want him to be re-tested by the psychologist in particular. Despite my amazing ability to jump to the best-case scenario, I didn’t make statements like, “Gee, by the way you’re talking, it almost seems like you don’t think Thomas is autistic! He’s healed! Halellujah! Thank you so much, and of course we’ll be suing the school district for emotional distress if you’re wrong!” I didn’t ask questions, either. I know they can’t answer anything about medical diagnoses. I’m just going to play it cool and see what happens. Even if they don’t think he’s “autistic,” he’s still definitely got issues.
Everyone at school has been telling us how much Thomas has improved with social interaction. He still has to work on using language appropriately, but he is definitely communicative and shows compassion toward others. When Thomas’ cousin was here two weeks ago, he brushed against her and accidentally knocked her on her little bottom. She was fine, but Thomas was very upset about it. He was sad and cried for a few minutes. When he was with the occupational therapist a couple weeks ago, he broke something in her office (which was very small and not important, she assured me) and cried about it. His ability to show compassion for others and regret for his actions – especially those that were accidental – is a very encouraging thing.
Of course, due to our frequent use of the word “accident” at home, we’ve had to help the kids understand the difference between that and “on purpose.” Unfortunately, both Thomas and Hayley have realized that if anybody says that something was an accident, that means that nobody gets mad and a disinterested and apathetic apology will make everything okay. Hmpf. I have a hard time not laughing when I see Thomas willfully whack Hayley on her arm or yank a toy away from her and then tell me that it was an “accident.”
An amusing anecdote before I close: Last week, Thomas was riding his tricycle around the living room at break-neck speed and crashing into the ottoman. I had spoken to him about this a moment before so I was getting frustrated. I said, “Thomas, if you can’t ride your tricycle nicely, I’m going to put it in the garage and only let you ride it outside.” His reply: “Don’t say that to me, old lady!” I had to hide in the pantry so he wouldn’t see me laughing. It took me several minutes to re-gain my composure and by then, Thomas had moved on to destroying something else. I decided to let it go for the time being. I was in no state to dispense discipline. Thomas, 1; Mom, 0. I guess I’ve really got to watch what I say in the car to less-astute drivers when the kids are with me. It must be divine retribution.
"Well, sure I can!"
Jan 3, 2008 by AnonymousAs usual, the holidays are over way too fast! We had another great Christmas, and the kids didn’t get sick until the day after Christmas, which was a bonus.
Christmas was pretty hard on the kids, but my mom tells me that it’s like that for all children. Thomas handled the whole thing very well, getting really jacked-up only at my folk’s house on Christmas Eve. We let the little ones open their presents before dinner to keep them occupied, so Thomas got to play with his new remote control Lightning McQueen car! After a few bumps into the baseboards, he mastered the controls more quickly than I thought he would.
This was the first year that the kids were really excited about Santa Claus. It was so much fun to watch and talk about. They understood that Santa would come down the chimney and leave presents while they were sleeping. And the kids are so good at opening presents now. We forgot to bring my mother-in-law’s present over to her house on Christmas so the kids and I brought it over to her yesterday. Thomas and Hayley had it opened for her before she knew we had brought it.
So after the excitement and exhaustion of the holidays, it seems that Thomas is very ready to be back at school which doesn’t happen until January 7. Every day, he wakes up and asks if he can go to school. He doesn’t get upset when I tell him no, but I think he’s just very eager to see his friends and his teachers again. That is to say, I think he likes school.
At school this month, they conduct free evaluations for children to see if they would benefit from being in one of the classes offered at Thomas’ school. I’m going to take Hayley to see if she would place in one of them. Thomas’ teacher urged me to do it, and of course, being a worried mother I asked her “why?” She has seen Hayley and let Hayley be a part of the class on occasions when we’ve visited. So she mentioned the testing for Hayley and I was immediately on-guard. She said that she didn’t notice anything wrong with Hayley but that she would be a great “typically developing” student to have in class, to model for the other kids. (Phew!) She may be able to join a class simply because she is “at risk,” having a brother with autism. However, if they really find nothing lacking in her development, we may be able to pay tuition to have her attend school there, depending on how much it is. I’m interested to see what happens.
Thomas had his five year check-up on Monday, and he was so good! Until we had to hold him down for the four shots he had coming to him, that is. Otherwise, he was great. The doctors and nurses there really like my children which is a nice feeling. Thomas’ pediatrician felt that Thomas is doing really well for being autistic and mentioned (as so many people do) that he has seen children much worse than Thomas. Of course, no doctors ever mention that they’ve seen children much better than Thomas, too. Anyway, the doctor said that he wasn’t concerned by the frontal lobe spikes shown in Thomas’ EEGs and that he felt it was fine to not do the sleep study given the circumstances. That makes me feel a little better, going into the doctor’s visit with the neurologist on January 21. I can at least say that Thomas’ pediatrician says it’s okay! Then I can ask her in very firm tones why she won’t give us more than one month of refills at a time on the Clonidine. It’s such a pain to have to make the calls and have the pharmacy call the doctor, etc. Why can’t we have a few months? We’re wasting manpower this way. So I’ll be sure to ask her about that on the 21st.
Thomas has a few new expressions that are so cute! We’re not sure where he picked them up specifically – probably from me, but I can’t remember saying them on a regular basis – but they’re so cute. Thomas is so helpful now! I’ll say, “Thomas? Could you pick up your socks and put them in the wash for me?” And he’ll say, “Well, sure I could!” It’s so adorable. The other thing he’s saying is, “Well, not really.” Example: “Thomas? Will you try some green beans please?”
“Well, not really.”
“Thomas? Do you know where your snow boots are?”
“Well, not really.”
He’s obviously using this phrase instead of “No” or “No, thank you” just to mix things up a bit. He uses it when it’s not entirely appropriate, like in the green beans example above, but we know what he means and it’s really interesting that he’s substituting new phrases for old words that perhaps he’s grown tired of. I wonder what that means in terms of his development.
I know this is silly and that it doesn’t happen this way, but lately I’ve been feeling like Thomas is “recovering” little by little over the months. I know that the vast majority of children don’t “recover” from autism, but he’s been getting better and better and we’re doing nothing but trying to teach him everything we can at home and sending him to school. We don’t have him on a gluten-free diet, he’s getting no private therapies at home and he’s taking no meds except for the Clonidine. Yet he improves noticeably on a monthly basis. When I was at school on the 21st for the Holiday Sing, Thomas’ occupational therapist and I were chatting for a while and she asked if Thomas is still doing a lot of screaming at home. I was confused for a second while she explained, “You know, remember last year when we talked and you said he was screaming a lot?” Finally, I remembered what she was talking about; I did talk to her on the phone and ask about what we could do when he screamed at home. I realized that he doesn’t do that so much anymore. He doesn’t have to swing on the platform swing at school, he doesn’t need the one-to-one attention of the occupational therapist at school anymore and he’s not having any outbursts or having to be removed from class for being disruptive this year. “What did you do with Thomas over the summer?” Everyone asks us that. We didn’t do anything. We went to the zoo a lot and swimming a lot. Thomas learned how to hold his breath and jump in off the side of the pool. That’s all I can remember about last summer.
So we’re looking forward to school starting again. I’m very interested to see how Thomas does after Christmas Break because it was after this vacation that he went downhill at school last year. The outbursts and need for OT increased after the time he was off school so I’m really excited to see how he does, especially since he’s looking forward to going back.