TNF: Tell me about your family?
Joni: For Maria and I it was love at first site. Our eyes met across a crowded diner with an intensity that neither one of us had ever felt before. We’ve been together for seventeen years and spent most of that time cultivating our partnership and navigating the tricky road that is commitment. We definitely lived a very full life traveling everywhere we pleased and going to every spa we came across!
We always dreamed of having children and so we began the long process. After what seemed like a year of tests and planning we finally choose an open but anonymous donor for the part neither of us could provide. We also decided that I would be the one to carry and we would use Maria’s eggs so that we would both be connected to our children. Maria would genetically influence the babies and I would biologically influence them, a perfect solution for the creation of our beautiful family.
Our first attempt was successful but the universe had other plans for that sweet soul we conceived and we lost her at ten weeks. It was such an emotionally challenging experience for both of us but in hindsight we now know that Cosmo and Vivian were waiting for us and everything that was happening, however painful, was meant to be. After a half a year of recovery for my body we tried again and had no luck, holding onto hope so as not to be discouraged and counting on one hand the chances we had left we tried a third time. This was July 2009. Eureka! We were pregnant, and at the ten week ultrasound we saw that we had been doubly blessed with Cosmo and Vivian! Hallelujah!
TNF: When did you realize that your twins were autistic?
Joni: At about 18 months of age we knew they weren’t hitting their language milestones, our biggest concern was for our son Cosmo. He had said a few words here and there but not with any consistency. Vivian had a few words but still not enough to meet her milestones either. Then we received a letter about our donor from the sperm bank we used. It said that five children from other families with the same donor were experiencing some pretty big developmental issues. Four had childhood Apraxia of Speech, which is a neurological disconnect between the brain and the motor planning it takes to speak. And another had in their words “high functioning Autism.” We contacted our pediatrician and she referred us to a speech therapist for an assessment of Cosmo. She said she wasn’t as concerned with Vivian at that time. The speech therapist recommended Cosmo begin speech therapy sessions immediately.
Right around this time the kids had their second birthday, and had their two year checkup. Our doctor gave me a handout to complete (times two) while we were in the office called the M-CAT, which is about a dozen questions regarding milestones. Questions like: “does your child point” or “do they fixate on single subjects”, and “do they play with other kids or by themselves mostly”. I filled them out best I could as the kids cried from their shots and needed my undivided attention. I told the doctor I wanted to spend a little more time answering the questions, so I sat without the kids and filled them out more carefully. The doctor called that afternoon to tell me that both kids needed to see a developmental pediatrician because they both “failed” the M-CAT form. I was alone, Maria was at work, and I just had this overwhelming surge of sadness and sobbed. I had no idea what to do or how to even tell Maria. It was surreal to say the least and super emotional.
After the shock subsided a bit we jumped on researching developmental pediatricians and making sure we choose the very best. Surprisingly, there are very few doctors who have this specialty. I think there are about 3-4 in Southern California. We choose the one that our pediatrician recommended, she seemed to be very qualified with a stellar reputation (34 years of experience). We then got put on a three-month waiting list! Ugh, we seriously were going to have to wait that long to get an answer.
I bought a bunch of books about early signs of Autism and slowly worked my way through most of them. But my emotions were so raw, I actually could not keep the books on my bedside table, I couldn’t look at the word “autism” every time I walked into our room. But the books most certainly helped as a primer for autism, and the amount of time I had to digest the information was very helpful. There were many signs that I knew fit Cosmo and Vivian, I was pretty certain that they were going to be diagnosed on the spectrum when we finally saw the doctor.
TNF: Did you have any suspicions of early autism or anything similar?
Joni: Maria and I were first time parents and really didn’t suspect anything since we had no other kids to compare. Also, having both kids have challenges that looked very different from each other was also somewhat confusing. They had always been incredibly loving and joyful as babies so there were no big red flags.
TNF: Tell me about when you found out.
Joni: We took the kids in for their assessments on two different days. The doctor spent two hours asking us many questions, observing the each child, and attempting to formally test them (stack blocks, put pegs into holes, color, etc). Cosmo went first, and thirty minutes into his assessment she turned to us and told us she was certain that our son had autism. But she said she would talk to us more about this in the parent meeting we had scheduled for the following week. With Vivian she said no such thing, Vivian was socially more engaging than her brother and that is a big red flag, the social engagement part.
When we met with her, just Maria and I alone, she confirmed that both children had autism but she struggled with Vivian’s diagnosis (because as we learned more recently, autism looks different in girls and is harder to diagnose). Both kids had such different challenges and differing needs to address.
We sat with this doctor for hours as she went over all the recommendations for Cosmo and Vivian. She said things like “this is a marathon, not a sprint” and “your days of traveling are over” and “it’s good that you stay at home with the kids Joni, because they are both going to need about 40 hours of therapy a week” or one of the most shocking, “this is the time to call in every loan or form of financial assistance you can find” By the end of the meeting she recommended we become Regional Center clients, a state run early intervention program which by law is provides assistance for every child with a developmental disability.
Her recommendations were 36 hours a week per child of ABA home therapy. ABA is short for Applied Behavior Analysis and she told us it would build a scaffolding of skills for the kids to build on as they grew older. She also recommended 2 hours a week of OT (occupational therapy)which is to help with strength building, motor planning and Sensory Integration issues. She also recommended at least 3 hours a week of intensive one-on-one speech therapy for both children.
We left her office and felt mostly shock at first. The world was going by at it’s breakneck speed, and we were just floating. Not really in our bodies as our brains buzzed and our minds reeled with all the information we had just been told. Eventually, we went through many stages, denial, feeling sorry for ourselves, blaming ourselves, but we had to move quickly so we put the emotional stuff away, we couldn’t allow our feelings to be an obstacle. We delved into learning as much as we could about autism and channeled the emotions towards finding answers. That’s one thing Maria and I have that bonds us, we both find that information and knowledge is incredibly empowering.
We were going to learn as much as possible and also find a way into a program that the developmental pediatrician said was a long shot but the best early intervention program in the world. This program is at UCLA and has a waiting list a mile long with people travelling from around the world to bring their children here. We were steadfast, we would get them in, and eventually we did. It was amazing, a 10-12 week “partial hospitalization program” they attended for 20 weeks and it was a crash course for the whole family. We got to see how Cosmo and Vivian learn and started to understand various types of therapies and approaches to “treat” autism. It was also an incredible resource for me emotionally, from the weekly parent support group to the mandatory weekly sessions with the social worker. The thing that really sets this place apart from most other programs is that they met our children where they were instead of trying to make them fit into a mold. That is a valuable lesson to learn on this journey with your kids. Many therapy approaches do not actually see the individual child, they just run their programs, like kids are robots, and all that is important is that the learn compliance and pre-academic skills.
The post Autism Awareness Part One: Parents–Joni and Maria Finding Out appeared first on The Next Family.