Thursday, April 7, 2011

Jordan's Journey

I think I need to start with the signs we saw with Jordan that had us begin to push for answers. Jordan was a great baby, he slept well and didn't say much. He would cry when he was hungry or needed his diaper changed, but otherwise really enjoyed time looking at his toys and was okay on his own. He was the baby that if one wasn't going to be held (we only have two arms), he would be fine in his buzzy chair. He wasn't stand-offish at all and although he was a rigid kid and still is (strong and stiff physically), he would always let you hold him or cuddle with him without a fight or complaint. Today at age 2 1/2, he is very affectionate and loves being cuddled. I know some children with Autism will not want that affection from others.
At 18 months old, we went in for our routine well visit and all three were screened for Autism. At that time, only Jordan failed the test, but we were told not to worry that he was a preemie and a multiple and will catch up. I left that appointment feeling something wasn't right and decided to ask our early intervention therapists what they thought. It was with their knowledge and a few more calls that I began getting him additional testing. The signs that our therapists said seemed like "red flags" to them included his lack of eye contact, lack of pretend play (not interested in playing on the phone, in the toy kitchen, with babies or stuffed animals) and the start of what they referred to as self stimming. Self stimulating or "stimming" I've learned can vary drastically from child to child. Jordan started his stimming by spinning wheels on toy cars (instead of wanting to play with them) and my Tupperware tops. This started around 12 months and I didn't think much of it. Around 18 months he began a new stim, by laying on his stomach doing what looked like a modified push up or what our therapist refer to as a reverse crunch. He would do this for as long as we'd let him almost going into a trance and not paying attention to you if you tried to stop him. Which leads to another sign for us. Not turning or looking when someone called his name or said "hey look!". Pre-therapy, you could not get his attention by using either his name or a phrase to spark his interest. It was as if he was in his own little world.

At this point, I was concerned that he could have Autism but to be honest with you, I figured he wouldn't be diagnosed and that we'd just start doing more therapy to get him through his delays and quirks. I kept thinking about all of the milestones he hit first before his siblings. He stood first, walked first, and really stood out from the trio in all things physical. The only area he really seemed behind in at this point was his speech.

Our next step was to get him in to see a developmental specialist to get their opinion on the situation. To do this, I contacted our regular pediatrician (who we did the Autism screening with) who told us to hold off until he was 2 years old, because they cannot diagnose before then. I wasn't sure what to think, so after talking to a few friends (some who have experience with Autism) I decided to contact the developmental specialist myself. I did and told the receptionist that my son had failed the initial screening and that I'd like him to be seen by this specialist. She told me there was a wait to get in to see him, but that she'd send me a packet to fill out and get back to her so something could be scheduled. Let me tell you, this was just the beginning of many, many forms I've had to fill out! If you thought signing your mortgage was painful, you'll be having nightmares after a few weeks of this.

After we got the paperwork in, Jordan was scheduled to see the specialist for October. I'm not sure if it was a coincidence or if it was planned but that just happened to be the month he turned the magic age of 2. At the initial evaluation, Jordan was observed while I answered a slew of questions about his behavior and development. When the appointment ended, I was told that Jordan seemed to be making a lot of strides the past few weeks and that he'd like to schedule the official Autism diagnosis test (ADOS) for January both to give him time to continue to develop and because there was that long of a wait for the test.

During those 3 months, I watched Jordan start to talk and begin some pretend play. I was excited for him thinking that it was a phase he had just gone through. I honestly didn't think about him being diagnosed at all up until the week the test was scheduled. At that point, I made myself start to think about him possibly being on the spectrum again, but I really figured he'd fly through the test and we'd be done with it.

Well, that was not the case. In fact- at the exam, Jordan was not interested in anything the specialist was doing. After each section, the doctor would stop to write notes and it would be very obvious that Jordan had done nothing they were looking for. At the end of the exam, the specialist said he would see me the following week to go over the results. I then simply said, "Its pretty obvious that he failed the exam, am I right?" In that moment, the specialist looked me in the eyes and couldn't hide his answer. He just nodded and said we'd talk next week.

There were no surprises at the results appointment. Jordan was diagnosed with an Autism Spectrum disorder. Since the diagnosis, Jordan has started an in-home therapy ABA program and been showing large strides and improvements.


  1. This is such great informtion. It's helping me understand and getting some insite to this disorder. In hindsite I see the red flags. I just wrote it off as being a preemie and or triplets. So glad you were persistant and pushed for answers.

  2. Pauline is so right, we all thought it was just the preemie/multiple thing. I am very glad you followed through and didn't wait any longer. Each day, as hard as the days may seem for Jordan,(and you) we see progress... Keep your faith, it is all working for good!He is making great progress.

  3. Hello, my name is Liz, I somehow stumbled upon your family blog which brought me here. We seem to have a few things in common, I have BGB triplets and two of them have ASD. They were diagnosed 2 years ago at the age of 22 months. If you are interested in chatting here is my email .