Mafe Maria: Personal stories by autism parent mentor, Maria Stultz

Lately, Joaquin (30m)

I wish I had done these type of summaries more often… Recently, trying to put together Joaquin’s full developmental history for the psychologist working on his evaluation, I realized how valuable it was to have the few posts I wrote, along with some of the little stories I’ve shared on flickr. Now that things have shifted a bit, it becomes even more important for me to document snapshots of Kiki, so I can always refer back to real data, and not rely only on my very bad memory, always biased by the trend of present events.

So without further ado (and I realize this amount of detail is only enjoyed by Joaquin’s parents and grandparents), these days my bollito…

playing with a train

Is working to eliminate his last surviving nap. A champ 2.5-3 hour daily nap that up until two weeks ago he rarely wanted to skip, and constituted the main time at which I did my artisan work. So in the past I would’ve seen this move as a major catastrophe in my life. Today, although some times I wish he slept for at least an hour (so I can take a nap), I take it as a very good sign that Joaquin is enjoying more the time he spends with me… And… You really can’t be that autistic when in the middle of an ism (exclusive stimming time during which all requests from planet earth are ignored), somebody asks “Are you sleepy? Do you want to take a nap?”, and you immediately stop and go “NO!”

Understands and exercises the power of “no” in a very reasonable but confident way. Actually, “no” started happening for him around late March. During the months of his mild regression, “no” started to become “no no no nooo!”, and rather than communicating with us, by the end of those months, he would just say it to himself when something upset him. By now, “no” is back to its more powerful use, and he doesn’t drop it indiscriminately as a statement of toddler independence. So, because Joaquin is very selective on his no statements, we honor them as much as possible.

Negotiates with the confidence of a seasoned businessman. Last time I cut his hair, I knew I had to keep some M&Ms handy since the previous time it took a couple of servings to get him to settle down. This time, perfectly sure of his bargaining power, knowing that I would do anything to get through the task of cutting his greñas, he ramped up his “emes!” requests and made me pour him several servings. When tired of the chocolate, he continued demanding “piña!“, and then “croissant!”. And just yesterday, while having his vision examined (yeah! I did it!), when he had finished with the bribe snacks I had brought to distract him, he demanded with great confidence and the same authoritative tone: “pirus!”. HA!… Audacious little bollo.

Speaks with a vocabulary of 300-400 words between English and Spanish. Still sticks to single words or multi-word expressions he’s learned from us (e.g. wash hands, I’m done, no more). Not really big on putting several words together in a sentence except for qualifying certain nouns with numbers or colors (two cars, red car), or asking for more food (more juice, mas agua). Despite concerns about the complexity of a bilingual environment for a child in the autism spectrum, Joaquin has proven that he’s already established both languages, understands who to use them with, and doesn’t seem to have a problem in learning and improving his language skills in this environment. It’s only until very recently (last 3 weeks) that he’s finally started to repeat new words as soon as he hears them. Our little bollo has never been a fan of imitation, so this new development is very exciting.

Still loves to type and announce letters, numbers, and symbols on my Mac. Also loves to have me write them at his command with chalk, crayons, or his magnetic board. His interest in drawing is back, with long diagonal strokes in different colors dominating his pieces; he proudly calls them all “slash”. “Puntos” or “puntitos” (dots) also make a recurring appearance in his compositions. I’ve also seen him draw very controlled horizontal and vertical lines — “Nice line control”, I compliment him. Although not very often, he has already shown the ability to draw a closed circled shape by himself. Showing him how to draw a circle was the very first time he let me move his hand to teach him something. Lately I keep asking him to draw an X, which he ignores, but when he intersects strokes by chance, he immediately calls it.

drawing with crayons

Seeks physical contact with me very often during the day. By this, I mean: It’s almost as if I’ve grown an external rather tall appendix. If not asking me to pick him up, or getting comfortable on my lap, or holding my hand to take me places, or resting his head on my legs, I can feel his little body leaning against me or hugging my leg almost all the time when I have to step away from him to do things like cook or do dishes. I was thinking the other day, perhaps this is a way to reward me for the challenge — I get to baby him now much more than I was able to when he was younger and more elusive.

Stopped watching videos entirely for the last month. Yes, in the first two days, it was me trying to redirect him to play with me, but after that, it was as if he realized that I was a changed mom, and he had much less of a need for videos. Like, some times I’d offer to watch one, and he’d go “NO!” and run away from the TV room. The last week, however, he’s started to ask me for his favorite, “Surf’s Up” (an episode from The Backyardigans). I’ve found that he doesn’t pay much attention to it if I’m not right there watching with him. And, he’s no longer counting characters. They now have names like “Austin” and “Equia” (Uniqua), and they are “niños” (children). Yeah!

Loves songs so much!… This has happened for a long time, and when I started really listening to him, I found that he was singing songs I just couldn’t recognize through the emerging nature of his language. Singing is an immediate way to connect with Joaquin, and the best way to experience long uninterrupted eye contact from him. He certainly has some favorites, and some are reserved for daddy (Coming ’round the mountain), but any song or rhyme has a gravitational force he just can’t resist. Memorable enough to document here, I recently introduced the “Pillo Song”, a song composed and masterfully interpreted and danced by Pillo (a stuffed Pooh Bear that we considered our first born son for many years, until Kiki came). Joaquin LOVES the song, and after just three or four interpretations in front of the mirror between his bath and bedtime, he knows it and cues me to go on with “tu-tu-turu-tu-turu-tu-tu…”

Has some powerful memory, which is fantastic because mine sucks. You stop mid sentence in a song or book story, and he gives you the word that comes right there. Not always, but many times… specially the first and last words of a sentence. He knows his books (the ones he lets me read) by heart, and sings his favorite songs with passion.

Loves it when I join his isms. It is particularly noticeable that he really enjoys me imitating his sounds exactly. I also love that too. In Spanish we call that “resonancia”… When two people make the same sound together matching the frequency exactly, the audio waves amplify and you get a really cool acoustic effect. We don’t get to experience resonance because Joaquin’s sounds shift very quickly, but I’m pretty good at matching his pitch and guessing where he’s going, and he really digs to hear me along with him, to the point that now he makes a sound and immediately looks at me with an inviting smile knowing that I’ll follow him. He also smiles and looks at me through his isms when he hears me matching his sounds. Just yesterday, he even stopped his routine, looked at me with a huge smile (eyes having to squint to fit in his face), jumped in his place while looking at me, waiting to see if I’d do the same thing. So I stood up and did my jump. He cracked up and continued isming. That’s pretty special :)

Is back enjoying his old summer passions: taking hikes and walks, playing at the park, and in our backyard with chalk and the garden hose. During our most recent walks, I have welcomed the arrival of subjects different than cars. There was this very glorious walk during which he ventured into so many front yards exploring new objects and words, sharing his discoveries with me. Then, he found a twig that triggered a long ism in the middle of the path to the park. Although I didn’t imitate him right there, I participated by handing him cones he was enjoying throwing around. It was pretty relaxing and fair compensation for the very fun and interactive time he shared with me on our way there.

playing by the creek

Finally sat down on his potty yesterday (wearing pants, of course). Today he was more than comfortable to wait for me there while I took my shower (at all times, by his own initiative). And although he still hates to poop, he goes more often now than he did in the last several months (from 3-5 days between poops, we’re now down to 0-2 days). Could be the increased consumption of fresh fruit and veggie juice (as opposed to plain water)… Could be also the new positive vibe I’m throwing at him every time he starts fighting the urge. In the past, when he started crying and telling me “popo!”, I would respond with an empathetic “oh no! popo!” face and act as if I too believed that popo was a hard thing to take. But over the last weeks, I’ve started to respond with a cheerful “POPO!!!! That’s awesome! Let it rip! Let it go man, let it go!”. I still pantomime Lamaze breathing for him, and rub his back while we get prepped for labor, but I act more excited and even came up with a silly SILLY RIDICULOUS song that I never thought would stick, except he’s now asking me for it (and singing it). It goes:

Si popo! Si popo! Si popo!
El popo es fantástico!
El popo es genial!

(It translates “Yes poop! Poop is fantastic! Poop is genius!”)

Lately, Joaquin… is the bright center of my universe.
And some of you may realize the irony at this turn of events.

Precious Kiki isming
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  1. On , Liliana Chacon-Menay wrote:

    He is an angel and you are an angel mi mafesita. I’ll write soon. Thank you for sharing all these… It’s not only the grandparents who care you know. Love, L.

  2. On , Ria wrote:

    As I am writing this you’ ll be in the Option Institute. And maybe that’s a chance of a lifetime. I so expect you to be inspired and positive. The hermit will stand aside, and smile at the Maria that’s unfolding her potential to interact and feel at ease with the people around her. And that’s just one of the gifts this boy brings to you.


  3. On , Maria wrote:

    Oh Ria!… As if you had foretold it… That was exactly the gift of last week. I have much to tell because what happened this week to me was not what I expected, and it was exactly what I was missing. Not only in my program with Joaquin, but also throughout my life.

    As soon as I have a chance and finish unpacking and settling back home, I want to share all of this with you and the other sweet people sharing this log with me. The experience I just had was so powerful, and I’m afraid that with the swing of things back in reality I may start to forget. I don’t want to forget!!!

  4. On , KSR wrote:

    Been thinking about you as you were in MA…..Hope all was enriching and inspiring…….I imagine Kiki was both a bit frantic on his first big separation from his mommie and also thrilled to have some bigtime Daddy time….a week of “just the boys”!