(This is the second part of a two-part series. Once again, you have been advised, I’m long-winded.)
“Mom, wake da baby up. Mom … Mom, MAWWMM! Wake da baby up!!”our blue-eyed boy yelled in my ear as I feverishly tried to find a “cool” shirt for our six-year-old to wear for school.
“Okay! Just a minute! Wait,” I gasped. “Did you just make a five-word sentence?”
“Mawwwmm wake da baby up.”
Five words! FIVE. IN.A. ROW. I hugged him tightly, praising his new sentence repeatedly. He acted as if nothing had happened. Nothing to call my mother about at 7:08 a.m. on a Monday. All he could care about was that we went to the crib and woke up baby girl. He still won’t say her name and she’s over a year old. But to be fair, he just learned to say our six-year-old’s name four days ago.
With our blue-eyed boy, everything is celebrated with high-pitched praises and clapping. It’s not that we didn’t praise my six-year-old when he was little but his path is just very different. Our six-year-old, H, followed what doctors would consider a more traditional route when it came to development — walked early, and has been talking non stop since his second birthday.
Our blue-eyed boy, J, had a rough start (see Art of Waiting, part 1) with breathing concerns but as soon as he was able to keep his oxygen levels up and strong we were sent home and hadn’t had a medical issue since.
Knowing he was more of a “true preemie,” I perfected a polished response to J’s earlier years — “Oh, he was a preemie so he’s just a little behind. He’ll catch up.”
Friends, family and strangers would nod and smile, some even sharing a story similar of a child they knew or raised themselves. (If you are the proud owner of a NICU warrior badge, I’m hugging you.) All the stories reminded me that his 13-day stay was a cake walk compared to others and J was able to come home without an oxygen tank (though it was considered) and was a happy chunk.
I was able to keep my patience during this waiting period because he was happy, as long as you kept his belly full. Having an older sibling kept my mind off the thoughts wandering …
“Why isn’t he talking?”
“Man, is he clumsy sometimes.”
“Oh baby, mama wishes she could understand you.”
“Will he ever be able to have a conversation with someone?”
Assurance from family and friends helped, too, but the questions always came back. The closer J approached his third birthday, the more I realized that somewhere around the age of two, his development stopped progressing. He hit all his one year milestones around a year, all except talking.
“Oh, he will talk when he wants to,” Oh, if I had a quarter for every time I heard that phrase and still do. And while I agreed to some extent, my gut was telling me something more was going on. But I didn’t know what and I didn’t want to be rude; everyone was just offering encouragement because kids do develop on their own time. And J had always been on his own schedule.
I cannot speak highly enough of Parents As Teachers; every month our PAT instructor would assess J and share with me all the positives she found. She’s always good for my ego when she visits us because she reminds me that I’m doing my best as a mom. (We all seem to feel like we fall just a little too short in that department, right? It’s crap but that’s a topic for another day.)
In January 2016, days before his third birthday, our instructor, and my solder and I all agreed that a more in-depth development screening was needed. And the next one just happen to be in February. I wasn’t nervous about it until the night of the Dial 4 screening, with our baby girl in tow, I filled out page after page of forms, question after question second guessing my answers. When did he start talking? Um, I thought, he says less than 50 words now. Is that really talking?
I was used to J being all over the place but the instructors weren’t. I could hear them trying to corral him to a station. He made them chase him around the room, barely spending a minute at each one. I couldn’t help but laugh. Humor is a great defense mechanism and I will make the lamest joke on Earth to help lighten an ominous mood or settle any unease of a situation. I’m a long-time member of the goofball club and proud. (We are accepting members for anyone interested.)
Those ladies were able to check cardio off their list that day. At the time, he didn’t even know a single color and he didn’t care to know. He just wanted to play with the new toys and scope out the room. All the colors, decor and lights distracted him (he has a tendency to not pay attention and run into things). It was all just too much for our home daycare boy to process. But instead of getting upset, he just wanted to play at his pace and they couldn’t keep up.
While some parents came back another night for the results of the assessment, J’s behavior moved us up to the front of the line. VIP treatment, y’all. I was told that J had a “significant to severe” delay in some areas and since he was a distraction to the other kids in the class, a.k.a. future class clown, they wanted to do individual testing to see if he qualified for an early childhood special education school in the district (and in the same building as PAT).
I knew of the school and heard great things so I was open to the idea. I left meeting, however, with a feeling of apprehensive; the words she used and how she kept putting her hand on my shoulder it was if she was telling me kid had cancer. “I’m sorry” and “I’m afraid” came out of her mouth often. I wanted to be the raging rip, I wanted to say “This isn’t a pity party. What are we going to do to help him?” I needed a more positive outlook like I had experienced with our PAT instructor, not uncertainty.
It’s 2016, let’s be proactive, let’s get shit done son. But it confirmed what I knew in my heart. We were in for another season of waiting and who knew how long before we had concrete answers on how to help J catch up.
Individual tests followed and meeting the teachers of the early childhood center gave me a sigh of relief. They were on the same page as me. They fell in love with J quickly. The specialists confirmed the initial assessment, he did have a significant delay in speech and attention with other areas of concern being repetitive behavior, social awareness (he has no stranger danger) and comprehension.
He was a shoe-in for the center and we were thankful. God was setting us down the right path, this was the right time to get J help. A doctor’s appointment around the same time of his acceptance to the free school set us up for something we knew was coming — a referral to Children’s Mercy for a ASD and ADHD exam. More paperwork, more detailed questions about his behavior ensued. My favorite was the form that asked if he was in a gang. I wanted to say he was in the Apple Dumpling Gang or for those in my generation, I wanted to say he was in the “Yoo-Hoo with a Little Rum” gang. I did my best to deflect that my son was on a different path than our oldest and our youngest. It took a little longer for my soldier to get on the same page as me but I can’t blame him — no one wants to think about those things with their precious child.
I’d like to say that particular season of waiting is over and we now know if J has a specific condition but I can’t. We are still waiting and I’m a pro most days at it. It takes three to six months to be seen and it’s been more than three months now. Sometimes I think the waiting seasons we face are harder due to the impatience and frustration of today’s society — we want everything done and answered right this second. This push for answers now can be maddening. Thank God for His Word for it has given me great comfort with all this. And if you are in a waiting season, praying for an answer, I hope you can find comfort in His Word, too. Not sure where to start?
“Be Still and know that I am God,” Psalm 46:10 has become a scripture I have a love/hate relationship with. I know that He’s in control and that I do need to wait and be still for his timing is perfect but I don’t always want to hear it. We will get answers at the time we are supposed to but that doesn’t mean I don’t get irritated by it. I am human, He is God. He is working everything out for our good, even when we don’t see a single good thing.
If you are looking for encouragement Psalms is great for that. I have the Bible App on my phone and I do not sleep well unless I have read some of His Word before I go to bed. Another great way to get closer to his Word is to search for scripture on Pinterest (search inspirational or bible quotes). You’ll be surprised what speaks to you. Save your favorites to your phone or print them out and place them throughout your home or office so you have them whenever you need more of a spiritual pick me up. Coffee and Spark are great ways to wake someone up to conquer the day but sometimes we need a spiritual awakening. Can I get a amen? Even if we know the Word well, sometimes we need a refresher and gentle reminder that He is in control and that all his plans are for our good.
Mindfulness is easier than you think and is a great way to help you stay connected to the present.
God gave us J for multiple reasons and in this waiting season I’ve opened my heart up to God even more and have let him show me the beauty in waiting, of being still.
I will celebrate every new word, improvements with his attention, his sensory issues – every small achievement while we wait.
There is peace knowing that He’s taking care of you but it takes practice and patience with yourself. And by being kind to yourself; you’ll be more open to His love.
If you know a secret to waiting, please share.It’s a great opportunity to add some color to your life canvas. And I hope you can see the beauty in waiting, for those are when the little moments, the ones that matter, happen.