It’s us. We’re here.
Today Ruben is 3 years old!!!! Happy Birthday, Ruben! Unfortunately, he has a fever today and isn’t feeling so great. We had to cancel his family birthday party – but hopefully we can reschedule. Halloween was fun though! Look at these polar bears.
3 4 months old (!), fall is in full swing, and life is busy and full and great. Here she is at 3 months old (as in – this post has been a draft for a long time):
Look at those cheeks! Or, should I say jowls. She is delicious and very squishy and she weighs almost as much as Ruben when he was 1 year old. We can’t help but marvel at her growth rate – Ruben was such a pipsqueak in comparison. She is rolling and scooting already … and (we fear) it seems mobility is near.
Anya and Ruben are very sweet together (that is after we made it through11 weeks of Ruben hitting Anya any chance he got …) – we all cover her in kisses any chance we get.
She’s struggled with various digestion issues – we could even say a little colic. But, I cut out dairy and wheat and soy (!) – and she is much happier. We’ll see. Hopefully she’ll grow out of all food sensitivities and her reflux soon. We could use more sleep. I could use some yoghurt and a piece of bread :-). Otherwise she’s very sweet and smiley. She laughs and thinks Ruben is especially hilarious and nothing is better than that.
Ruben is doing well. He had an echo in late July and his heart seemed to be holding steady. And, he had another echo last Tuesday, and we think his heart remains stable, although we’re still waiting to hear results. Our heart news mainly has to do with geography – after much agita with insurance, and a heart-felt check-in with Ruben’s old surgeon Dr. Chen (now at Seattle Children’s Hospital), we’ve decided to return Ruben’s care to New York. We will be working with Dr. Alejandro Torres – he is the interventionist who did Ruben’s last catheterization a year and half ago and he couldn’t come more highly recommended. Most likely the care/consultations/tests/interventions will take place at Columbia as opposed to Cornell (in case you were wondering).
The other news in our lives that we’ve been wanting to update you all on is that Ruben is not so neurotypical. Those of you who know Ruben know this – he’s wonderful, and silly, and so joyful, and loves to learn, and soaks up words and sounds and songs, and he is full of quirks … which all together, add up to autism.
We got an official autism diagnosis in June (the same week Anya was born) and secured services for Ruben through Early Intervention as soon as we could. The evaluation process itself was the worst part – the process is quite demoralizing as it is a deficit-based approach … the worse a child does on the evaluations, the more services and support they will be awarded. No fun. Though, ultimately, we were relieved to get the diagnosis as he was immediately awarded oodles of services.
Upon the advice of many, we moved forward with an approach called Applied Behavior Analysis (ABA). It’s intensive in terms of time and structure – In the beginning of July Ruben started 20 hours/week of ABA with 30 min of Speech Therapy every day and Physical Therapy and Occupational Therapy one or two times/week. Along with his morning school hours – he is in programming most days from 8am – 3:30 or 5:30. He is a very busy guy! And – he loves it. He is thriving from this approach. We could not be bigger fans of Early Intervention.
It just so happens that the two teachers at the little school he attends in the morning are eminently qualified and a perfect fit for Ruben. Susan – his teacher – is a certified ABA therapist, and Reva is a speech therapist. We are very lucky that they were both able to take Ruben on as their case. So, Susan and Reva work with Ruben/us every day – they have basically joined our family 🙂 They are experienced and artful at what they do, the best of the best – we really struck gold. Susan also helps train us as parents in how to communicate, be clear, consistent, and see the world through Ruben’s eyes.
At this point we’ve “grieved whatever fantasy we had of a neurotypical child” (Barrup, 2014), and we’re fully on board with Ruben just as he is. The challenge will be finding environments (school) that will allow him to be and thrive. This will be an ongoing process for the foreseeable future. If anyone has an amazing preschool and/or school to recommend – let us know!
Sam is the parenting champion of the year – picture him coaxing Ruben to eat some lunch, with Anya on his hip, and on hold with some agency/school/insurance company/health care provider. He is very busy. Parenting a heart baby and kid on the spectrum take a ton of time and work! The UFT/DOE Childcare Leave is saving our butts.
Our next few posts will be about regular life around here – some snippets of whats good in our lives. For now, just wanted to provide these updates.