How Did You Know?

Since sharing our story I have gotten quite a few questions. Most frequently, "How did you know?"

How did we know? We didn't. Well, not really anyway. Conor was hitting all of his major milestones on time. On the later end of the range, but on time nonetheless. He rolled over (both ways) by 4 months, was sitting by 7, crawled just after 10, and took his first steps in the airport at 15 months. The crawling was hard for me and I worked with him on it a lot. Everyone told me that it was better that he wasn't crawling. They would say, "It's so much worse when they are mobile." I hated that. Or, "He's just lazy" and "Boys are always later." I really hated those too.

Conor started daycare at just over 7 months. We were lucky to have help from grandparents until then. I wanted that, "I will love him like my own" kind of care and we found it. Our daycare provider expressed concerns early on about Conor's lack of strength and stability but we brushed it off as Conor being at home without much independence until that point. Being the only grandchild with 5 grandparents gets you a lot of one on one cuddle time, but maybe not as much "figure it out on your own" time.

Conor was sick a lot after starting daycare. I hear that this is common. Constant ear infections. Visits to the pediatrician every week. We knew that tubes were inevitable but our pediatrician was hesitant to do them so early. "It's normal. He will grow out of it as his immune system builds." I was worried about his hearing. About his balance. Were his ear infections interfering with his equilibrium? Was that the reason he wasn't walking?

At the recommendation of our daycare provider we sought out an evaluation from Help Me Grow (HMG). HMG is a free birth to three program offered through the school district. They provide services for speech and other developmental areas and we are lucky to have access to HMG in Minnesota. They came to our house, did a full evaluation, and put our minds at ease. Conor didn't qualify for services through them. He was mastering skills "in his own time." Around this same time we switched to a new daycare provider with a better location and longer hours.

The transition was easy but Conor continued to battle multiple illnesses. When Conor was out for a week with Hand Foot and Mouth, I got a lovely [awful] email from our new care provider who was kindly [heartlessly] kicking us out. I did not take this well. How do you process, as a mother, that someone you trust to care for your child can be so cold and disconnected? I thought it was normal for toddlers to be out sick a lot? My coworkers can attest to my anger, heartache, and stress.

At 15 months we started Conor in a center where he started to succeed. He was eating better, walking, and finally had surgery for ear tubes. I was so relieved that his hearing tests improved after surgery. It started to feel like we had finally found what he needed. He was thriving around kids his own age...and catching up. But of course, there were still things that stuck out. Like...he didn't wave. Or point. And those are weird things for a toddler not to do.

Because I spend too much time on the internet, I convinced myself that Conor had autism. This was weighing on me too much to ignore so I reached out to a friend, a clinician, who specializes in autism therapies. With her help, we got Conor scheduled for an evaluation where again our minds were put at ease. Yes, Conor had a delay and low muscle tone, but we were told that there was no concern for autism. And the waving and pointing? He started doing both.

Summer ended and Conor had back to back ear infections again (despite tubes) and now strep throat too. I worried about an autoimmune disease. He is skinny. His muscles are weak. Is it all related? The illnesses and the delays? In a follow up with our pediatrician, we were presented with the option to go through genetic testing. Was it worth jumping through all the hoops to get into genetics now? At first we didn't have an official referral. Then we didn't have the right referral. I had basically given up when I received a personal phone call from our pediatrician asking if we got everything scheduled okay. I guess that was enough of a push to try again...and off to genetics we went.

The rest is history (or five posts back if you missed my original post).

How did I know? I didn't. But what I do know is that you need to be an advocate for your child. Sometimes boys aren't "just lazy" and sometimes it isn't "just another ear infection." Be informed. Don't be afraid to ask questions. And keep asking questions if you need to. Ask for help and don't ignore your intuition. Sometimes it doesn't feel right because it isn't right. And sometimes you are just a mom and you are going to worry even if it is normal. That's okay too!

XX, Bev