It has been a very busy summer for us. Simon is in his class for 2 hours twice a week, which comes with a 45 minute drive one way in rush hour traffic to get there and a 30 minute drive home. Plus he still has his SLP and OT coming to the house for an hour every other week. Eleanor is taking swim classes and gymnastics. And George…..
Well, I think I’ve mentioned George’s delays before. Back in May, he was assessed as having a Global Developmental Delay, which basically means that he’s significantly delayed in many areas: speech, cognitive, social/emotional, gross motor, and fine motor. So he’s also been getting Infant Education therapy every week and OT every other week. After getting that assessment, we decided to have George evaluated by Seattle Children’s Autism Center, which is where Simon was diagnosed. In order to get George an appointment, I need a referral from our pediatrician, along with a referral for an audiology assessment. The conversation went like this:
Me, trying to give back story: “George was assessed with a Global Developmental Delay, and….”
Me: “Um, because he’s delayed globally?” (seriously, you’re the doctor, you should know what GDD is.)
Him: “He’s fine.”
Me: “No, he’s not. He’s not talking yet, or waving, or pointing –”
Him: “He’s fine. Who told you this?”
Me: “<Early Intervention organization that Simon has been going to>”
Him: “That’s a scam company. They’re just scamming you. He’s fine. He doesn’t need to talk until he’s two.” (!! NOTE: If a pediatrician ever tells you this, find a new doctor immediately!!)
Me, starting to cry a bit, because that’s what I do when I get pissed: “Well, they’re doing a great job with Simon, and all of Simon’s therapists have agreed that George needs to be evaluated.”
Him: “They’re just scamming you. You should go back to California where you can get some real autism help.”
Me, starting to raise my voice: “Look, I just need a referral to the Autism Center and one for audiology. He’s obviously delayed. I’ve already got one autistic son and I’m not going to screw around on getting my other son help.”
Him: “Well, I’m telling you he’s fine.” (‘No, he’s not. The therapists have spent more time with him that you have, you dick, so I’m going to trust them on this’ is what I thought, but did not say.)
Me, shouting: “Look! I have an almost 3-year-old who only has two words, is systematically chewing the fingers off his sister’s dolls, won’t make eye contact without prompting, and who can’t eat elbow macaroni because it freaks him out. Now I have an 18-month-old who doesn’t talk, doesn’t point, and doesn’t wave. About the only things he’s got going for him is really good eye contact and doing flips off the god damn furniture. I need those referrals or I will find another doctor to give them to us!”
Him, to his nurse as he’s backing out of the room, “You give her what ever referrals she asks for.”
Damn skippy, Chippy.
So, I got the referral and George had his first evaluation with the Autism Center today. He was his normal charming, laughing, smiling little boy and I went armed with videos of all the cute, but odd, things that he does. I spent around 90 mins talking with the nurse practitioner while she observed Georgie.
What it all boils down to is this: She doesn’t know if he’s autistic or not. He’s on the younger side for a diagnosis anyway (18 months seems to be the youngest I’ve heard of and he’s days away from 19 months). Obviously, since Simon is autistic, George is at a much higher risk, and there are definitely some things with him that would meet the diagnostic criteria. He has no words or signs. He doesn’t point, wave, or gesture. He exhibits some sensory seeking behaviors and some possible stimming behaviors (he flaps his hands and rocks when he gets excited). So, based on those things then, yes, he would qualify for an autism diagnosis. However, he has some very strong positives that would counter the diagnosis. He has awesome eye contact (without prompting). He has a great social smile. He has good joint attention (is able to play at one task with another person for an extended period of time). He will follow a point. Those things kind of contraindicate an ASD diagnosis. So, she just doesn’t know what to make of him just yet.
He is being referred for further testing that will probably take place in a few months. In the meantime, I’m trying to up his Early Intervention therapy, get him into a study at UW that will get him even more therapy, and get him into a Gymboree class or playgroup of some kind.
Like I said, it’s been a busy summer, and August is going to be just a crazy. Simon only has 2 classes left and then he’ll have a month-long break before starting the developmental preschool through the school district. George has his audiology assessment in a couple of weeks and we’re having some genetic testing done on Simon to rule out Fragile X syndrome. Eleanor starts Kindergarten at the beginning of September, so I’m trying to get her to the eye doctor and dentist and get clothes, etc. Plus all the therapies for the boys.
And, you know, just life. Living. Being a family.