Three Years Old; Brand New Year

Ah, the New Year. Wonder what it holds for us.

                It has been about a year since I started this blog, right around Wylie’s 2^nd birthday. I get so caught up in the fact that we still have such a long road ahead of us that I forget how far we’ve come since his last birthday. Wylie turned 3 last week, and he has grown up so much.

                A year ago I was obsessing over the amount of words he knew. I was definitely hoping that in 6 months he would just—poof—catch up to his peers, and we would start to gear up for preschool. He has always been so vocal. He never shuts up. I mean, he does… but his mouth is moving a lot. Ha ha. The only thing, tho; most of the time what comes out of his mouth is not quite the English Language.

                We joke that he is speaking Mandarin or something. He seems to talk with intent. With focus. He says the same jibberish over and over again, like it means something to him. Shit, we assume it does mean something to him. Unfortunately, we’re not really comprehending.

                However, he has come a long way from the dozens of nouns he knew at age 2. I wouldn’t be able to keep count of the amount of words he knows—he flew through the pictures on his Language Builder cards in no time. He knows all the characters on his favorite shows, and his list of favorite shows is growing. No more nonstop Spongebob- by the way, when Wylie’s nephew referred to “Ba-Ba” the other day, we realized Wylie hadn’t mispronounced it in a long time. Spongebob is simply “Spongebob” now.

                And “Grandma” and “Grandpa” are simply “Grandma” and “Grandpa” now. That was a shocker. Wylie started off saying “A-ma” and “A-Pa” but it quickly evolved to “Mu-ma” and “Pu-pa.” It was very endearing, but rather suddenly, as in, overnight, “mu-ma” and “pu-pa” disappeared. I wonder what it was. “Mu-ma” and “Pu-pa” always tumbled out of his mouth rather clumsily, as if he got the main consonant sounds in each word, but had a hard time planning how to form them before saying them. Suddenly he got it right. My parents are rather sad about it, haha. No nicknames for you!

                What strikes me now is how he has easily grasped any tangible concept thrown at him, language wise. He gets his shapes and colors and he LOVES numbers. Animals, plants… he’s been really into this series on the Earth and he watches it with my dad. His sense of humor cracks me up, but I suppose as his mother, I’m biased. He’s just too damn funny. He’ll watch a shark swimming on TV and smirk and call out “Puppy!” He squeals when I tickle him and respond “That’s not a puppy!” And the running Toy Story joke, omg. He is kind of exasperating switching from “Toy Story 1!” and “Toy Story 2!” and “Toy Story 3!” My dad (can you tell that they are very close?) started joking with him. “What about Toy Story…5?” Now Wylie thinks he’s so cute. “Toy Story… TEN!” “dublee do ba da Toy Story ELEBEN!” (that’s not a typo, he pronounces “eleven” like he has a cold or something, hehe.) Yeah, okay, maybe it’s only funny to the people who have heard his cute little toddler voice in person. But honestly, my son is freakin adorable.

                But what is escaping him right now is more abstract concepts, to him, such as “What city do you live in?” and “How old are you?” The city thing trips me out. We live in a city that has 2 nouns in its name. Nouns he knows. But in a new context, he won’t answer “What city do you live in?” even with a verbal model. You can tell on some level he isn’t really trying his hardest; he’s just not too interested, because he’s not really following what we are talking about. “What city do you live in?” means nothing to him. I’m kinda… uh. At a stand still. I don’t know how to go forward, other than to follow the advise of his therapists and continue to demand the answers from him.

                But hey! Remember when I was anxious about getting him into another semester of “pre-preschool” through his ABA school? Omg, he’s in. He started the new semester right after his 3^rd birthday. Oh, what heaven! I’m so happy, I know he’s in good hands. He LOVES the kids there. Omg and he’s eating quesadillas for lunch time. Okay, not health food or anything, but he’s never eating quesadillas before.  I’m so excited about the new semester. The director- the woman who made it all happen, the Generous One- stopped me in the hallway to gush. “He’s doing so well! We will need to talk about the next steps after this semester. LOVE that little guy of yours!”

                So this year is off to a good start. As he get older, I’m anxious about the decisions I have to make about the future. I think about blowing off state early intervention services and how there are new services now that he is 3. Pfft. And what about kindergarten, and first grade? Am I kind of assuming we will be fine by then? Do I have this vision that I will get to skip over all the fighting over IEP stuff others go through? That he can handle regular education without any supports and all will be A-OK? I don’t know! Is it just that I am procrastinating because I am intimidated? Argh. I can’t get my head around my own feelings yet. I sort of have this…disdain for any treatment goals and implementation strategies that I have to relinquish some control over. The idea of some a-hole I pay taxes to telling me what they can offer my son for support kinda rubs me the wrong way.

                Argh. Thoughts for another day.

Completed Semester! ...What now?

Once again, feeling a little unprepared.

                Arrrrgh. I don’t know. I was not made for morning shifts. No, I don’t feel like I have the rest of the day to get everything done. I feel like I get off work and it’s a few hours until I have to go back again.

                Particularly frustrating when I feel like I’ve missed the mark when it comes to communication with Wylie’s school. Oh dear. So I thought his pre-preschool semester ended when his whole ABA school took a winter break. Found out a day before it ended that I was wrong and it ended a week BEFORE the break. And I, true to my very nature, felt slapped in the face by my own procrastination. (Shit). Yeah. Okay. What now??

                To catch everybody up, Wylie just completed 3 months of a pre-preschool program, specifically designed for children who are ready to transition into a classroom setting. This doesn’t necessarily only encompass “high functioning” “aspies”—some children in the class are bound for straight up regular ed, and some children have just been doing the ABA thing for a while and it’s time for a chance to figure out some new accommodations. Wylie, I’ve been assured, is Super Advanced. Maybe not even autistic, haha.

                But Wylie isn’t exactly ready for school. He talks in jargon more than actual words. His self sufficiency skills are a little behind—potty training and getting dressed are skills we haven’t really tackled yet. He’s not a stickler for routine, but transitions are still likely to leave him unfocused.

                He has gained some important skills and experience during this semester of school. He’s 2 years old, and he’s doing a full 7 hour day at school. Um, amazing? I think so. And he LOVES it. He loves the other kids. His social skills aren’t perfect by any means, but his social interest is encouraging. And there is no doubt that he is at like kindergarten level academics now. The actual SCHOOL stuff is a piece of cake for him. As much as I know about autism (which, you know, is a lot, but I’m a mom and not an expert) I find it incredibly bizarre that language still escapes him. Yes, I admit it, it’s harder and harder for my feeble brain to wrap my head around uneven skill development. I get that it exists. I get that the brain has all these different pathways n stuff. But watching it in real life still makes my own brain hurt. Were ya thinkin about speaking any time soon, Baby???

                Anyway. The semester is over. The semester was granted to us. We cannot afford the 2^nd semester. No way. I was pretty resigned to max out my credit card for it—after all, how many semesters could he need?? He’s so smart, after all. But after a Family Discussion, I’ve been persuaded. I haven’t been strong armed, I’ve been thoroughly persuaded—maxing out credit cards is sort of a desperate act. We might find ourselves needing that safety net. And I would do anything for my child, but when you are poor and your child may need long term expensive services, you gotta sorta prioritize. I want him there SO BAD. Thinking about it just makes me cry. It’s almost an ideal situation. But I guess I can’t put all my eggs in one basket for “almost.”

                So I have a few options to pursue. I can awkwardly beg for more kindness and charity when I’ve already been blessed with so much. And let me tell you—I will. I don’t expect any. It’s too much to ask for. But it’s not for me so I have to ask. There are private preschools to look into. There is the public school system—he turns 3 soon, and technically I’m sure he still has an IEP from ECI 0-3. I’m not sure. A little apprehensive, tho.

Preschool Challenges or How to Pack a Lunch for a Picky Eater

                Wylie has been in a preschool preparation program for a little over a week now. I just dropped him off about an hour ago.

                He really seems to enjoy it! When I drop him off, he seems to be in a good mood. One aide even mentioned that he seems so happy in the morning. The poor thing has had to quit napping cold turkey, but he gets about 25 minutes of sleep on the way home, haha.

                I am so grateful for the opportunity to face some real world challenges NOW, while we have an understanding staff who “gets it.” Wylie is such a bright little boy, but it is such a useful reality check to see him around peers who possess more skills than he. I don’t like to throw around the word “high functioning,” but these are children who have minimal behavior issues and have gained a lot of skills through therapy. Wylie is about “middle of the road” in this group, with some children ahead of him and a few with a few less skills, but I think he is a little on the young side, not yet being 3.

                It’s weird the things I suddenly feel weird about. They actually changed their sheets to reflect that “some of the kids are not yet potty trained.” Err. I am probably paranoid, but is my son, like, the only “some”? Logically, I know I need to snap out of the comparison game, anyway, but I’m glad I am dealing with it NOW (you can’t help your feelings, but you can try to change your perspective) than dealing with it when I thrust him in a regular preschool and try to play “sink or swim” with the neurotypical children, heh.

                The hardest thing for ME so far has been something I didn’t anticipate as being a big challenge at first: packing a lunch. WOW. Preschool lunch for a picky eater is, like, terrifying; absolutely terrifying. They won’t heat anything up and his spoon and fork skills are uh. Ya, he’s behind, I’d say, haha. Sooo, yeah, the first week, I didn’t really fight it. I knew I had to come up with a solution, but his lunch sorta screamed “A bad mom packed this load of crap” in that first week. We are talking, uh, crackers. Chips. Mini muffins. HAHA! Well! Jeez luise, the kid lives off chicken nuggets, grilled cheeses, and fishsticks. He eats yogurt and pears, too, but we were asked to join this program with such short notice that I had to wait until I had a day off to go grab him some insolated lunch bag (and wasn’t there just recently some fear mongering study that suggested these things are crap??) Well. I finally got an insulated bag with several ice packs and threw some crap in there I’m not sure he will eat, but hey, they have aides and therapists and a speech therapist who does feeding therapy, so maybe I can weasel out of fixing these picky habits myself, haha. Upon talking to my mom about it to see what she thinks, she responded “Yeah, dude, we totally tricked some daycare into potty training you, I’m for it.” Haha. And then on Monday this week they sent a note home saying essentially the same thing, that we should try foods even if they reject it at home, and it’s something they will work on.

                Either way, my fears have subsided. He doesn’t seem to come home grumpy or starving, eats well when he gets here (I mean, in comparison. Haha. Fishsticks aren’t exactly health food), and he doesn’t seem traumatized. I get reports about what they do all day (although they are a little light on explaining his level of participation… grr…) and I’m SURE he’s enjoying the YOGA class they have going, tee hee. I’m so happy. I’m so grateful. My baby’s doing okay.

                I cannot get complacent, though. He has kind of been reminding me of the hare in the tortoise in the hare (although not LAZY, he works incredibly hard) in that he was so ahead at a year and a half and now there are a lot of kiddos surpassing him. Again, I need to stop. Really. I need to stop comparing because it isn’t fair to anyone. I just need to make sure I’M never the hare, and I never get complacent just because he is a bright boy. I know parents make mistakes… but I hope I always do right by him.

Unexpected: Good Weather and Pre-Preschool!

I’ve been having a bit of a fantastic week.

I took my last vacation of the year before the retail season heats up (hopefully!! Tough few years for the US…) and it has been pretty peachy. The temperature has dropped dramatically in Texas, where we have set a few records this summer, and I’ve been able to go outside!!

                       

Which is good, because Wylie is a trip. Wouldn’t you know, this Gamer Nerd Mom with a severe vitamin D deficiency because of her insistence on living like a character on Twilight would have a NATURE loving autistic son. Haha! You didn’t wanna play video games, Wylie?? No?? Okay. Haha, I’m just teasing, stereotypes are lame… But Wylie loves him some nature. We went to the park today and he just wanted to… hike. I wanted to, you know, play on the swings, or climb… no, we went on a hike. I’m really scared of bugs. And they are pretty big in Texas.

We have been swimming a lot. Actually, Wylie gets more autistic when we are swimming. It’s kinda strange how many people tell me that when they take their children on the spectrum swimming, their children are more likely to talk and make eye contact… I hear this a lot, but it’s not so with Wylie. It may be he is just reacting to MY behavior… he’s TWO, so you can imagine I hold him, and I’m VERY paranoid about not noticing his face going under, so I sorta lock onto his face in the pool. It may just freak him out, because I haven’t seen him have an eye contact AVERSION for several months. He does like the water, though.

He has been doing incredibly well. He has started to take a more active role in dressing himself. He has tried foods on my insistence… poor baby can’t stand peanut butter, but he gave it a try twice. I’m very proud of him. He rolled a ball back and forth to me- the first time we’ve ever played anything resembling catch.

A few days ago, the executive director who runs his school asked to have a meeting with me about his schedule. I felt like it sounded like something big, so I pulled the hubby along. Sure enough, she had some heavy stuff to lay down on us.

“You know how we talked about preschool a few months back? Have you given any more thought to it?” she begins.

Well, yeah. Actually, I have. I have been doing a lot to see if I could sort of prepare him for preschool. We’ve worked on numbers, and letters, and colors. We’ve practiced reading and listening and sitting. I’ve researched the nearby preschools (there are some fancy ones nearby and I’m being a bit of a snob. Which is completely irresponsible of me because I’m broke as shit.) I tell her.

“Well, we are starting a new program here, a sort of ‘pre’ preschool. It will be taught by an actual preschool teacher with the object of placing children in the real world school system after they graduate here.” She goes over what sounds like a pretty intensive program- all day, 9 to 4, with a social lunch break and actual subjects like math and Spanish and yoga… Some pretty fancy stuff, here. None of my snooty preschools were THIS fancy. She continues.

“We will be using ABA methods, and everyone will start with a one on one aide, and then we will fade those aides when we can throughout the semester. There will be a huge emphasis on language development and social skills with the other kids. There are some older girls with more skills I think he can learn from. We will do a readiness assessment at the beginning and then at the end of the 12 week semester.”

Now, as exciting as this is, it sounded um. Incredibly expensive. And it was. I mean, REALLY expensive. And then she says:

“I think this is what is right for Wylie. He doesn’t need to be here forever. He does SO well and he is SO bright. That’s why we will give him a grant for his tuition and we will pay it in full.”

I’m crying right now, just as I cried that day. I stammer, “That’s incredibly generous…” through tears and subdued sobs. She shrugs it off. “It’s the right thing to do. I expect him just to surpass everyone else, really. Either way, we’ll know what his strengths and issues are and we’ll have an idea about a good placement for him for next year.”

I am so excited! A little scared. It’s a long day for Wylie. But he just has this personality, man. He doesn’t necessarily need ABA DTT drills all day, but he needs to be engaged. He is just too laid back and a little aloof. He doesn’t get to spend a lot of time with other kiddos.  I think this will be a great experience for him. We will see how it goes—it starts next week! Thumbs up!

ABA Drill Sergeant Mom, Meet Doubt

             

                So Wylie was in a day-camp. Haha. Yay! His school arranged the camp for the students and broke them up by age group. It took place an hour after his last ABA session ended in the morning, so we had to kill an hour for a week by having lunch at a nearby McDonald’s. Today he finally figured out the routine and when he realized leaving the fast food joint meant going back to school, he started howling and crying. I really, really, REALLY didn’t blame him. He has an extra hour of ABA on Thursdays, and his day was already long. And now he knew he had to go back. BS. Yeah, Buddy, I gotta agree.

                When we got back to his school, he found a black bean bag chair in the corner and slumped down in it, sulking. I was surprised to see him so frustrated and disappointed. He’s usually pretty happy to be out of the house. But it was a really long day for a 2 year old.

                I’m not really conflicted. At first, I was pretty skeptical about this camp idea (it was a little steep for the amount of hours) but by the time I really started looking into nearby preschools, I liked the idea. The therapist who runs the school had already talked to me about some of the programs they would work on and thought it was a good start to prepare him for a preschool setting. I do not know if Wylie is ready for a fully included regular old preschool. He’s just so bright and very good at following instructions, as long as he really understands what is expected of him and people follow through. He’s just like his mama, we’re wild, free spirits and stubborn and complainy, but give us a little structure and we’ll flourish.

                So, when I started looking, all these questions that I hadn’t thought of before suddenly needed answering- hmm, can Wylie follow along with his peers? Can he stay focused on one activity for a length of time? How much prompting/attention would he need?

                 He does well in his social groups and his imitation is impressive. I speak as a proud mother who remembers a little boy who wouldn’t repeat sounds and had no idea what you expected of him when you modeled a gesture or motion. He pretty much gets that if a bunch of people are participating in an activity, it’s probably appropriate to join in. Oh, shit, wait. That’s one of those awful NT “sheep” traits I just brainwashed my son into possessing. Oh, wow, that kind of hurt my brain a little bit.

                Maybe I am conflicted?

"He doesn't seem autistic to me"

"He doesn't seem autistic to me" is one of those common phrases heard by parents of ASD children that can provoke all sorts of emotions. My fellow moms have expressed their anger, frustration, and sadness when an ignorant person makes a remark like this.

Today I heard this from the woman who runs Wylie's school- a wonderful BCBA who knows Wylie personally and often remarks how much he reminds her of her little toe-headed toddler who can also be spotted running around the building along with the other kids. She works closely with his team, monitors his progress, and has always been proactive when it comes to his behavioral treatment plan. When she said this to me, I was mostly perplexed.

I think she's wrong, by the way. And I argued with her. I’m not even that puzzled that a professional might say something like that about my son, but. I find it strange. I find it strange because there are other MUCH more high functioning children attending her school than Wylie. I think I have to pull the other parents aside and figure out if she’s ever said such a thing to them, as well. HAHA! The conversation I had with her went something like this:

“What specifically do you think is missing from his characteristics to warrant an ASD diagnosis??”

“Well. I just wouldn’t call his problems ‘pervasive’ in the strictest sense. I think he has more of a language disorder than anything else. Socially he’s reserved, but not exactly withdrawn. He’s laid back. Aloof. Most of the kids I see are either withdrawn, overwhelmed to the point of not being able to interact, or socially anxious. That does not describe Wylie. He just isn’t really motivated to be social.”

“Hmm. It’s a spectrum disorder, right? It could manifest differently with different kids, right?”

“Yes… but he just is getting everything academically. Everything we ask him to do, he does. He understands everything.”

“Hmm. He’s 2 and he doesn’t really get 2 step commands. It took us a while to get 1 step commands.”

“Language issue.  Sensory processing issue, maybe.” (For the record, she has basically conceded that he has social, language, and communication dysfunctions at this point… now she’s bringing up sensory processing. Sounds… a lot… like autism… to me…)

This woman and my developmental pediatrician are, like, totally into each other, too. And my developmental pediatrician is always seeing Wylie in the WORST light, and seems to always bum me out using a pretty grim deficit model to describe him. Heh. They take each other’s opinions very seriously, and yet they are at opposite opinions of Wylie.

I’m just confused. It is really interesting how two different people looking at the same child from different perspectives can come up with completely different conclusions about him. I don’t find the BCBA ignorant or dense or less than diligent when it comes to her research or her ABA treatment. She has actually persuaded me several times when I challenged her course of action (most recently she has been suggesting replacing some of his one on one DTT (discrete trial training) hours with social groups and I originally opposed). It IS true that the people here seem to be more on the severe end of the spectrum. I don’t exactly see a lot of aspies at his school. Wylie is obviously intelligent, and even Mr. Pessimistic Developmental Ped has used the word “gifted” to describe him. He has no splinter skills and does not appear to be “profoundly gifted” or a “genius,” but he’s bright.

“I really think he needs to be in regular pre-school. I would even suggest not telling them about the diagnosis. I think he will easily get the academics of it. We are teaching him how to learn from his peers. The concern I have with Wylie is that he just seems like he could really care less about social interaction, and some pre-schools aren’t going to push that interaction. He doesn’t really have any serious behavior problems. We could go interview some schools together, tell them he’s shy, and see if they can pair him up with maybe a bossy older kid with an assertive personality to lead him around.”

Uh. Hmm. A little dumbfounded. But I think about it. Perhaps some preschool director WOULDN’T realize Wylie isn’t quite sure who “Mommy” is. I’m not really against hiding the diagnosis in this case, but it doesn’t really sit well with me that A) I think his therapist actually doubts his diagnosis at this point and B) I’m thinking he really wouldn’t “pass.” Then again, this isn’t really something that needs to happen tomorrow—I don’t think she is completely off base when she says he may be ready for preschool by the time he’s 3. He’s definitely a smart cookie and his language isn’t stagnant—he makes spontaneous requests for familiar items, his vocabulary has expanded since his 2^nd birthday, he sometimes (rarely) strings words together… his stims are still quite severe, he screams and squeals and jumps and jogs in place… repeats nonsense phrases like “Tickletickletickle DAH… tickletickletickle DAH…” I could see him distracting a whole classroom.

Oh, anyway. Who knows. Structured Preschool with academic credentials sounds a little expensive, too. I’ll start looking into it. I still haven’t really perfected his current treatment right now—  I still want to look at some additional speech therapy.

It’s a lot of work. Wylie, Mommy’s not trying to rob you of your childhood, I promise. But who are you kidding, you would waste a lot of it watching Spongebob reruns if it weren’t for me.