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A Boy Growing UpNurturing a Special Child

Healing Journey: September 2010

Sep 30, 2010

01. Help!

Exhausted. Having to cook every meal every single day really drains me. Wish I could buy prepared food once in a while… And with all this cooking spilling over the weekends, I don’t have time to prepare games for therapy. By the end of each day I’m tired and can’t work (on games) at night as I used to. It’s way too early to say this, but… if we don’t find volunteers for our program I may end up hanging myself.

03. Reaching

Today I was able to build on Joaquin’s latest ism to pick puzzle pieces and count over them as if they all were octagons. I joined the spirit of the ism while adding drawings of real octagons, and he loved it and decided to draw over them with squiggles I had not seen coming out of him very often. This is a little later on the day.

[In response to Poppy’s comment on how much more expressive Joaquin seems versus six months ago] We feel something is changing, but it’s hard to tell since we’re with him all the time, so change happens in tiny increments you sort of get used to, and then think it was maybe like this all along. I do see him more out of the depths. Even when he isms, he keeps a radar around him and notices me a lot, and snaps out of it very quickly.

His posed smile is not as good-looking as his spontaneous smile, but the fact that he now smiles at my camera upon request is GOLD to me. He’s becoming more responsive in so many other ways, I’m so happy!

A posed smile

04. Teachers: Suzy Miller

Trying to send this video over to my mom this morning, I ended up in Suzy’s website and realized that I was 5 minutes away from her monthly Free Saturday conference call. I love these coincidences… They happen so many times in my life like little signs. So I joined the call this morning. It was pretty cool. I find what she says very consistent with what we’re doing, and yet, it adds another dimension and tool to the arsenal. Thank you Bonni for sharing this.

09. Boomerang

"Boomerang", by Joaquin

10. The Horse Boy

Beautiful documentary. It was so good to the soul to see other family go through the same stuff. Seeing another child like ours “want van!!!”, hating the horse they all thought he would like. And, oh my god, the things these parents did (and any one of us might do) to help their little boy. My husband kept asking me… “So we have to go to Mongolia?”. Ha ha!… I’ve thought about this lately: Parents of special children are pretty special too. If not so in the beginning, we definitely become better people because of our children. I salute you all friends and feel honored to be in your company.

12. The Business of Being Born

A little upset at myself for not having questioned standard medical procedures around Joaquin’s birth. I only researched and made an informed decision about circumcision, but took all the other stuff they do to a newborn plus labor induction without question. I’ve always resisted drugs and medical interventions, but trusted them on this very important one…

13. Inspiring Growth

All right!… We played the new game I prepared. It pushed him a lot and he used all his loud strategies to get payoffs without any work. I lovingly stuck to my guns, but I’m thinking of adjusting it for next time. It was getting on my nerves, so I’m going to simplify it and tweak it based on what I saw him do this time. It was interesting that towards the end he was getting the concept of performing challenges to get his pieces (I had to simplify the original challenges to something super easy, as just touching an object). I already have a plan but will need tonight to implement it. The saga continues…

Super Shapes game

14. Challenges Game

Joaquin is playing the game!!!!… I had to tweak it a little to make it easier and more direct at the beginning (i.e. we’re not using the cards), but he’s playing it, and from here I can increase the complexity of it gradually. This bollo is so smart!… He’s performing simple challenges I improvise in a second to get puzzle pieces, and then he’s fitting them in the puzzles. We’re isming to calm down, and I’m all YAY!

17. Tiny Miracles

When we got to the park, I realized it was awfully crowded with children. Suspecting that Joaquin wouldn’t enjoy it I tried to change his mind about getting off the car, but he was sure: he wanted park. So we got in and braved the crowds, and amazing miracles happened, many of which I won’t be able to share right now. But this photo is a reminder of one…

He had not gotten on these slides in months (about the time when we started doing Son-Rise). But today, he went up and I saw him trying to get on the line to go down the slide but children kept stepping fast in front of him. I saw him almost quitting, and I loved him that minute and encouraged him to go down the other slide. But he didn’t. He went straight back to the slide he had first attempted, waited for a safe time, and finally made his move while I was cheering him below. I was so proud of him. He did it!… He conquered his discomfort of being among all these crazy children who had no mercy on his hesitation. I was so proud of my Kiki!

Seeing him fight through his fears and conquering is so inspiring!… And to think that anxiety never really goes away… I’m thinking of myself; all the little things that make me anxious: social gatherings with large groups of strangers, driving around aggressive trucks, having to cook for people different than the three of us, and so on… And many times I just have to suck it up, and many others I come up with a good excuse so I don’t have to do it. And here I am, cheering for my little one to suck it up and do it.

Tiny Miracle

So after the park, we came back and he poured all his energy on this project. His drawing here is completely different from how he was drawing before. And from these separate squiggles, his pieces are now filling up with wide open curvy squiggles and long strokes. It’s like he’s loosening up, opening up, and so is his artwork.

Squiggle drawing

18. Progress

Filling out my Max Impact registration forms. A few months ago when I did it for Start Up, the diagnosis was fresh and I was sad/angry answering the questions, thinking “what did I do to deserve this”. Today I’m all woohoo!!! He’s made such progress since the last time I filled this out. It’s hard to keep track of it every day, you just feel it, but then putting it down on a survey makes it so palpable

Just found this precious little video I had forgotten. Almost 2 years ago… Who could’ve ever thought that this little bocadillo would need a Son-Rise program?

21. Growing

Yesterday I thought I could do 4-5 hours in the romper room. Today, I feel the same. It’s just hunger getting on the way, and cooking and his wanting to have other activities besides playroom that sort of stop me. But I think I’ve gotten to the wonderful point of really truly enjoying my time in the playroom and wanting more.

23. Eliza

Eliza’s 1st day went great! Our mission: Be super user-friendly and give Joaquin complete control. From tears at the first sight of Eliza to jumping together in the romper room, Joaquin ended up interacting, making very nice eye contact, and initiating physical contact with a complete stranger. He loved and tested us joining him (I hadn’t jumped this much in the last full month). It was so much fun!… She did great!

24. Loving and Present

Sometimes I forget the most important thing, but then I get lucky to be with him during a very long ism. And during all those minutes I’m there doing exactly what he wants from me and nothing else, I start noticing chubby little hands clutching chalk and drawing passionately, huge round cheeks around that serious concentrated look, and I feel THAT THING that moves us so far up the mountain… The LOVE and AWE.

28. Tantrums

Today, Eliza and I had a great opportunity to practice everything we know about how to deal with tantrums, and to show the little bug that we’re here for him, and we love him, but the crying, yelling, and throwing of stuff is not really effective. Good thing we’ll have Katrina on Friday to discuss more, he he!

30. Biomedical Protocols

[Commenting on a friend’s frustration with her DAN doctor] Arg!… This is EXACTLY the reason why I decided not to bother with medical tests. Child looks perfectly healthy, and if test results come out bad, you suffer and look at your kid like he/she is rotten inside (and there goes your happiness for Son-Rise). If they come out good, they tell you not to believe it. So I just went with the SCD diet. It’s definitely doing great things for Kiki (attention span has gone up so much, and his energy level i.e. hyperactivity, down). And I think it’s helping me with higher levels of energy. I don’t feel sleepy all the time like I used to before the diet.

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