November 16, 2011
Max was born Christmas Day in 2008. Contractions started early in the morning. I had to wake his three sisters and brother up to open their gifts before my neighbor and birth partner drove me to the hospital. He was born without complications with high Apgar scores and healthy birth weight after 8 hours of labor. He was perfect from the beginning. The nurses commented on how quiet and patient he was with them, not crying when they did the PKU test or washed his hair. He was reserved and alert. We went home the next afternoon.
His dad was stationed in Iraq at the time and didn’t get to meet him until Max was two months old. And then his leave was only for two weeks. He didn’t return until Max was almost ten months old. That time is a bit of a haze for me. We home school and I had very little outside support. But everything progressed well with his check-ups. When he was about three months old I got very sick and the doctor said I need to go on some serious medication or they would admit me to the hospital. The hospital wasn’t an option and the medication lasted nearly a month which meant that I had to stop breastfeeding Max. He did well on formula and thrived, even though he was cranky and irritable.
Then at 11 months with the doctor’s recommendation we started Whole cow’s milk and Max did terribly. So, we switched to almond milk. I have reservations about feeding soy to my children and myself and it just didn’t seem like the best option for us. Everything in his system seemed to settle down. While he still refused a lot of food we figured that was just his disinterest in new foods that didn’t come from a bottle.
Max started walking at 12 months, that’s also when he first clapped. Other things would grab our attention over the next 15 months. He didn’t make car or animal noises even after 2 years old. He didn’t play peek-a-boo, call his siblings by any name or sound, he preferred to play in solitary, he didn’t respond to his name or look at people when they talked to him without a lot of prompting.
At the time we thought maybe he had a hearing issue. As the months went on and we tried to get him to sign more, we noticed he refused to communicate with us unless it was in screams. But his motor skills were progressing, he was extremely astute with electronics, and otherwise seemed like a “normal” developing toddler. Taking Max places became difficult and scary. He didn’t understand danger, wouldn’t respond to his name if he was heading into something harmful, would bolt, running as hard and fast as he could at every opportunity. The neighbor from twenty acres over brought him home once. He jumped on an elevator and nearly took a trip another time. We stopped going out because it was just too much or if we did Max has to have a “handler” someone specifically to handle Max to keep him safe. Even then it is a stressful experience. He was frustrated, we were frustrated and life was confusing.
In late summer of 2011, after many phone calls, referrals and waiting, Max finally got in to see a speech and hearing specialist. He was instantly diagnosed with SSD, Severe Speech Delay. He was a little over two and a half and was rating around nine months old in communication abilities. We started speech therapy immediately. The distance we have to travel, the cost of gas and time for my husband to take off work to watch the other four kids, make his appointments very difficult. Then we were referred to our state program for developmental delays, a free program where they come to your house.
Right now, Max receives 1, one hour visit to the far away doctor and 1 home visit each week. The home visit will end on his third birthday this Christmas. The speech is helping but there is still something else going on with Max. So finally, after much waiting, referring and phone tag, Max was seen by a psychologist and diagnosed with Autism Disorder.
To be honest, as I write this I’m still reeling from it all. We had suspected, the therapists had thrown the word around a little, possibly preparing us for the eventuality, but it just hadn’t been real until the words came from the doctor’s mouth. There had still been a chance, still be hope that this was just a phase, something he’d grow out of.
But one thing I have read is that early intervention is the key to creating a thriving environment for the child. So here I am, writing this out, creating a blog and filling out papers to get Max the services he needs like a communication device, additional medical insurance, looking at places to move to be closer to his therapists and last, but certainly not least, an Autism service dog. It feels like a mountain looming before us, the list of things we need to do, places to call, therapies to try seems enormous and there are no guarantees.
We do the best we can, one day at a time and hope that our efforts are good enough for our little boy.
Thank you for visiting this blog. For following our progress, for any support you give and kind words you offer. It is all very much appreciated.
From our family to yours,
Crystal – Max’s mom