"27 weeks, 6 days. I carried him as long as I could."
I bit back tears as the doctor confirmed what we thought might be the case. Something was off with Caleb, and it wasn't getting better.
I started going through the what ifs in my head:
- What if I had stayed more horizontal during bedrest?
- What if I had laid on my left side more, even though the TV in my hospital room was on my right side?
- What if I had eaten more protein and gained more weight?
- What if I hadn't had the panic attack that set off my labor again, and ultimately caused me to deliver the kids a few hours later?
I looked at my son, as he went back and forth between playing quietly with therapy toys to spazzing out for no reason. I knew it was coming, but it still hit me in the gut.
Caleb has autism.
It's been about 10 days since we got the diagnosis that Caleb is on the spectrum. A good friend from church referred us to their Developmental Pediatrician for an evaluation, and we were blessed to get him in really quickly. The doctor spent several hours (!!!) with Caleb, Sean, and I in a therapy room, observing Caleb's behavior. I didn't know that doctors were willing to give patients that kind of time anymore! Dr. Hoffman is a fantastic doctor who spent a lot of time working in a NICU Follow-Up Clinic before moving on to private practice and specializing in developmental issues. In other words, he knows his stuff. By the end of the evaluation, he diagnosed Caleb with mild to moderately severe autism with possible apraxia of speech.
We saw this coming, or we wouldn't have pushed for an evaluation. Caleb has much more significant delays than his siblings, particularly in the area of communication. Dr. Hoffman told us that prematurity is directly linked to an increase in autism. *sigh* I realize that it's not obvious just from looking at pictures on our blog, but we really struggle.
Caleb had a rough start to preschool in March, which was understandable, but he improved over the next two months. Then in late April/early May, he started regressing. During summer school, he actually escaped from his classroom without his teachers noticing.
When we try to leave the house for outings, it also is really difficult. Trips to the zoo end up having our family split in two: Sean and Caleb go off so that Caleb can cope, and I have the other three kids. And then we end up leaving wherever we are early because he has a meltdown.
Communication mostly consists of crying, pushing, or pulling us to items. No pointing, and almost all of the language he does have is either rote (like counting to 10) or echoing (like saying, "sorry, sorry, sorry"). He has maybe 2-3 words that he can use independently in a conversation. He gets so frustrated and angry when we can't understand what he wants, and it just breaks my heart.
And taking his lovey to wash it? Two hours of screaming and crying while that doggy goes through the washer and dryer.
There are a myriad of other symptoms that he has as well, but those are probably the most disruptive to our family life.
So what are our next steps? Early intervention is key for kids like Caleb.
- He has been in therapy since he was 6 months old, and has been in speech therapy for the last 18 months. We are continuing his therapy through the school district where he receives occupational, physical, social/emotion, and speech therapy. We requested a one-on-one para from the school at the end of last year, especially since he escaped, but we were denied. We did manage to increase his speech therapy from 60 minutes a week to 90 minutes a week. And we are for sure going to continue to call meetings with the school district if we feel that it is in his best interest.
- We are also looking into additional therapy outside of the school to see what our options are there.
- The doctor has Caleb on a DHA supplement (which he HATES), but it is supposed to help his brain work better. I've only forced it down his throat once, but I need to do it everyday. *sigh* Poor kid!
- I know it's weird, but we are also using some special essential oils to help support his ability to focus. We feel like if we can help him focus, maybe we can make more progress faster? Caleb rarely smiled until we started using these a few weeks ago. Now we get smiles more often AND he seems to be more connected with what is going on around him. The photos in this post? I took those tonight. I have so very few photos where we can even see Caleb's face, that his smiles caught me off guard...and I LOVE them! I'm serious when I say that these are the best photos I have ever taken of him. Period. Something is obviously working here, so we are continuing those as well.
So pretty much, we are hitting it from every side while praying that God helps us find the best way to help him.
As a mom, I'm now readjusting my expectations again. I had expectations for the way we would have a family, but quads dashed that pretty quickly. I had expectations for how much fun we would have running around town doing things when they got to this age, and I'm having to adjust those expectations again. I'm struggling with feeling like this diagnosis isn't fair to our family. Not fair to Caleb who has already gone through more than most kids his age. Not fair to all of our kids to have outings cut short because of the delays. Not fair to us as parents who just wanted a normal family. I mean, we still can't leave the house without people taking pictures of us! And now autism on top of it.
I know that God has a plan and a purpose behind everything, and I'm holding on to that tightly right now. Of course, our love for Caleb is absolutely unchanged, and we certainly wouldn't trade our kids for anything, but I wish I had a better response to this new hurdle instead of feeling like a whiney butt. Right now, I'm just trying to come to terms with our new normal and embrace the way that our family is designed....autism and all.