Emmett John’s Playroom

Emmett John is our 2 1/2 year old little bundle of energy. Like Elliott Richard, Lizze’s pregnancy with Emmett John was VERY complicated. She spent almost the entire pregnancy on complete bed rest. Emmett John was born 1 month early. We were terrified because of our experience with Elliott Richard a few years prior. Emmett John was born on June 26th, 2008 and was healthy and we couldn’t have been happier and more thankful. Shortly after he arrived home he developed complications. He became severely  jaundice and was on a wallaby blanket at home for months. He also began having periods of apnea or times when he would stop breathing. He was on a apnea monitor 24/7 for many months. Eventually it would be discovered that Emmett John was suffering from reflux so bad that it would stop his breathing.

I absolutely LOVE this picture

Once we made it through that we thought we were in the clear. Were we ever wrong. Emmett John was not hitting his milestones. He didn’t EVER respond to ANY sound. He also suffered from MANY ear infections, some that were resistant to antibiotics. We had his hearing tested and he failed. They told us that he was most likely “profoundly deaf”. He ended up having tubes put in his ears because of all the ear infections. After the surgery he still didn’t respond to sounds at all. Lizze and I started learning ASL. We had one final test to go before he was “officially” labled “profoundly deaf” and that was the ABR.

We went to Akron Children’s Hospital for that as we did do for everything. They administered the test. Lizze and I, as weird as it sounds, had prepared for and accepted that fact that Emmett John couldn’t hear. The question in my mind was to what extent and what are our options. Nothing and I mean NOTHING could have prepared us for what we learned that day. The audiologist came back with the results of the tests and informed us that his hearing is just fine. He just ins’t responding to anyone. Then the nurse looked at Lizze and told her that “this was good news, he’s most likely ONLY Autistic”. We new that this was always a possibility but had been convinced that he was simply unable to hear us. “ONLY Autistic”, I’ll never forget those words.

In the year that followed we made countless trips back and forth to Akron Children’s Hospital, sometimes 3 or 4 times a weeks. Eventually he was diagnosed as Autistic as well as having severe food allergies to milk, egg and lactose. Emmett John is on a VERY restrictive diet as a result. He hears and responds now but has little to no language skills. He is about 12 months delayed. Which puts him at a 25-30% deficit. We have employed EVERY possible form of early intervention including participation in a major study being conducted by Case Western Reserve University on new intervention techniques. All of these efforts, while totally worth it, have come as a result of great sacrifice.

Currently Emmett John has learned a few words and is adopting ASL as his primary form of “BASIC” communication. Emmett John is the most challenging of all our kids. He has frequent violent outbursts usually directed at Lizze and Elliott Richard. Gavin sometimes is becomes a target as well.  Emmett John is completely exhausting on EVERY conceivable level but we love him completely and will never give up on him.

Here is some random Emmett John….