If there’s one question I’m constantly asked once people find out about my boys, it’s “They’re so young! How did you know?” In order to answer that question, there’s some background you need to know. (Cue wavy flashback lines)
My First Pregnancy
I had a relatively normal pregnancy with X-man, except for some gestational diabetes, which obviously isn’t fantastic, but isn’t all that uncommon. Because of the GD, my OB decided to induce a little early due to his projected birthweight. The problem was that he didn’t handle labor well and his heart rate dropped, which prompted the decision to do an emergency c-section. Again, none of this is terribly unusual, but it’s vital to what happens next.
Surprise!
When X-man was 7 months old, surprise! I was pregnant again. And surprise again! It’s twins! Oh, and surprise! You have a genetic clotting disorder and need blood thinners, and surprise! We’re seeing a genetic marker that could be Downs Syndrome, and surprise! It’s preterm labor at 28 weeks and you need to be on bed rest. While X-man’s pregnancy was textbook, it was pretty obvious from the beginning that the twins were in for a bumpy ride. Finally, at 34 weeks, when they were both projected to weigh over 6 lbs each, and when I went into actual labor, my OB decided to deliver them lest I hemorrhage at the first c section incision. She assured me that she didn’t make the decision lightly, but that the boys would be fine and more than likely need a little TLC, but nothing major.
She was wrong. To be clear, I harbor no resentment for how it went down. She had no clue it was going to go like this. They were born barely breathing. I saw them for 20 seconds after they were born and they were whisked to the special care nursery before their imminent transfer to a different hospital with an actual NICU, where they spent the next two and a half months. We were in and out of ICU so many times after they came home, we knew all the nurses.
It doesn’t get any easier
Needless to say, at 12 months, I was unsurprised when the pediatrician told me he feared they had considerable developmental delays and referred us to the state program for early intervention. This is when things started happening again. Our fantastic EI (Early Interventionist) watched them during our first session and asked things like, “How long does Crash spin in circles like that?” And “Does Speedy try to spin every object he comes across?” Then my world came crashing down. She asked, “Meg, have you ever considered that they might have autism?” Now, I taught middle school music for 6 years. There wasn’t a single year I didn’t have at least one student with autism, so I wasn’t unfamiliar with what the ramifications of two ASD kids would mean. But it didn’t take long for me to start seeing what she was seeing. It changed our approach to intervention, to speech therapy, to occupational therapy, to everything. We reorganized the house to be safe for two kiddos who could climb before they could walk and had no concept of danger. We made the decision that I wouldn’t be returning to work for the foreseeable future. I learned how to function on next to no sleep. And we had to learn to hold loosely to our dreams for our kids’ futures.
wait, there’s more
In the midst of this, that same wonderful EI had been getting to know X-man. After a while, she floored me by asking the same question she had asked before. “Have you considered that X-man has ASD? He’s on the more high functioning side because he’s so verbal, but here’s what I’m concerned about…” And she went on to talk about scripting and the rigid structure, the meltdowns, and the limited interests, the lack of eye contact and the inability to carry on a back and forth conversation. If my world came crashing down before, this time I was devastated. For lack of better verbiage, I had believed I would have at least one “normal” one. Just one that would develop normally, that would grow up to live a normal life with a job and a family and would be able to look after his brothers in our old age. And so I had to face a new reality. I was the mother of three autistic toddlers. Everything I dreamed about when they were babies was going to be different. Milestones would be measured in inches. It wouldn’t just be us raising our kids, it would be a team of people, from therapists to teachers, doctors to bus drivers, and it would be up to me to make sure all these people worked together. IEP meetings would take all day. And we’d watch as friends fell to the wayside, through no fault of their own, simply because our lives were just so different.
Keep moving forward
And so here we are. The twins were diagnosed at 2 ½ and X-man when he was 4. The twins started therapies at 14 months and X-man at 3 ½. We praise God for that pediatrician who gave us the referral and for that EI who wasn’t afraid to ask the hard questions. We are so fortunate that we caught this early and that we could start helping them get the best start possible. We’re blessed to have a loving church family who is facing this life with us head-on and is willing to learn how best to love and minister to our kids.
I’m sorry for the long post, but I felt it important to share. If you’re still with me, thank you for reading our story. Feel free to contact me with your own!
Leave a Reply