Little Middle

Henry's speech delay.

I noticed that there was something different when Henry was 9 months old. He'd animatedly wave his arms and legs while making cooing sounds, but there were no real vowel sounds OR consonant sounds. He just sort of cooed. There were lots of "aahhhhs" and grunts, but there was nothing like Callie (his big sister) had done at his age (who basically emerged from my womb singing The Star-Spangled Banner). I chalked it up to girls being more advanced than boys, every child is different, blah blah blah. In the months that followed, I'd manage to convince myself that he was saying rudimentary words, but in the middle of the night when I laid awake with worry, I knew I was deluding myself.

At Henry's 18-month check-up his doctor asked how many words he was saying. I nervously said "Uh, none, really."  She smiled and said, "Well, then what does he call you?" I made the noise Henry used for pretty much all communication, and she immediately suggested we have him evaluated for a speech delay. Within a couple weeks we had a diagnosis: Henry's receptive language was that of a 3-year-old, but his expressive language was gauged at about 6 months. He was social, followed directions and made eye contact, but his ability to verbally communicate was profoundly delayed. We entered a world of further evaluations, therapists and IEPs.

By the time he was 2 he was in speech therapy 3 hours a week, and St. Francis put him in preschool 3 mornings a week. It seemed that he didn't understand that his mouth had to move to form words and they labeled it a "Motor Planning Disorder." He just made noises from the back of his throat. He was volatile, short-fused, demanding and just kinda grumpy. Henry was a very difficult toddler (and baby, too) and I'm not going to lie and tell you I missed him when he was at school in the morning. Frankly, I needed a break from his screaming. Go ahead and be horrified, but I wanted him to just talk. It took a over a year for him to make the /m/ sound. I left every IEP meeting sobbing for him, for the progress he hadn't made and the goals he hadn't achieved. I just wanted him to talk. I got to the point where I couldn't be around other children his age because they'd be jabbering away and I'd get so enraged and jealous and sad that I'd think "What a little show-off!" and feel such venomous anger (towards a TODDLER!) that I was ashamed of myself. I knew how little old ladies stared at us when he was sobbing and screaming gibberish in the grocery store, and I was embarrassed and ashamed. I felt like his preschool teachers didn't like him because, quite honestly, I didn't particularly like him at times each day. I couldn't picture a day where Henry and I would have a  conversation. I couldn't imagine what his voice would sound like saying words. 

Henry couldn't say actual words until he was just past his third birthday. He'd aged out of the birth-to-3 program and started speech therapy in our school. Our district's wonderful speech pathologist set modest goals for him and worked tirelessly helping him form sounds. Within a few months he was saying AND combining words and voluntarily telling me things. The first time he pointed out a firetruck on Brown Deer Rd and said "Tha's a big fiewtwuck!!" I started to cry right there in the minivan because I was so happy and amazed by the sound of his voice making words. He asked questions constantly about everything from bumblebees to space travel. The more he started jabbering the more I realized how intensely frustrating it must have been to have so much to say, and so many questions to ask ... but no way to get it all out. And I felt incredibly guilty for having spent so many days and nights impatient with him, angry at him and disappointed in him. One afternoon in Target's check-out line he was asking one question after another, and the clerk commented on it. I said "Oh, he just has A LOT of questions." She laughed and joked that I'd be really sick of it by the evening, and I solemnly said "I will NEVER be tired of hearing him talk. I can't take for granted even one word." Henry's successes are so sweet because his struggles have been so hard.

In winter during junior kindergarten a third grader on the bus mocked him, mimicking his speech and asking him "Why do you even talk? Nobody ever knows what you're saying!" That spring he sadly told me "My friends don't understand me when I talk to them." A tiny stab of sadness pricked my heart. I wanted to protect him from everything and everyone in the world, but I didn't know how.

Now Henry is in senior kindergarten. He still has a moderate expressive speech delay - there are many consonant sounds that are garbled - and he's in speech 1.5 hours a week. And he's still volatile, short-fused, demanding and just kinda grumpy. When he does talk to a stranger that person will often turn to me, puzzled by what he's said, and I feel intensely protective of him because I KNOW he knows they didn't understand him.  He is easily frustrated when people don't understand what he's saying, and my heart breaks every time I stop in his classroom (because I do have a legitimate errand to run at our school; I'm not stalking him, although I do at times) and he's sitting quietly playing by himself. It causes me physical pain when I hear of a birthday party to which he wasn't invited, or a playdate he didn't get asked to attend. I want so badly for Henry to fit in with his classmates, to be accepted and well-liked and confident and happy and everything else childhood should encompass. I want things to be as easy for Henry as they are for his big sister and little brother, who are both effortlessly social and sunny children. 

I've spent five years blaming myself for Henry's speech difficulties: Did the Diet Cokes I drank while pregnant with him cause this? Did the fact that I stopped breastfeeding him after just a few days make something go wrong? Did I cheat him out of his toddler months and the opportunity to learn to speak because we had Abe when Henry was still a baby himself? Did I not give him enough time, love or attention during some crucial point in his life, and it made his speech get so off-track? In the pit of my heart I worry that this has all been my fault, although in the back of my brain I know I'm being ridiculous, but frequently my heart talks more loudly than my brain.

Sometimes I forget that Henry is FIVE now. I always think of him as being much younger than he is because Callie seemed so much older than he does at the same age. Our youngest is 4 (Abe and Henry are 16 months apart) and he's Henry's polar opposite; Abe has been an easy-going child from the moment he was born. Frequently Henry will do something - like write or read a word all on his own and I'm overjoyed by his accomplishment, but then I feel guilty because it didn't even occur to me that he could do that because I don't think of him as being old enough to read and write. I don't realize all he's learning and accomplishing and thinking about, and sometimes I don't give Henry the credit he deserves and has worked so hard to earn.

Being a child who is anything but perfectly ordinary is brutal, but I have to remember that Henry does (and will) make his way in the world. He does (and will) have long-lasting friendships. With every ounce of my soul I want to protect him from everything and everyone who could possibly hurt him (remember that third grader on the bus? When Callie told me what had been happening I was actually shaking in raw, ugly rage), but I do know that I can't do that. He will have fun times and good friends, but also dark and lonely days. Henry is a bright and inquisitive kid, but also an intense and moody one.  Henry's good is so great, but his bad is really awful.

Henry and I both are really early risers, and in that quiet hour every morning when we're sitting together on the sofa and he softly talks about tornadoes and Scooby Doo and sewer systems, and I hug my sweet, tender-hearted, shy and sensitive Little Middle and kiss his blond noggin, whisper "I love you so much, Henry," and then ask him what he'd like for breakfast, and we start a new day together.

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Tracy Sparrow November 13, 2012 at 02:56 PM
Oh Julie...What a beautifully written account of your journey with Henry. I so understand all that you've expressed here, especially the rage that a parent experiences when an insensitive kid hurts their kid coupled with the frustration of dealing with the "special needs" (hate that term too) challenges. You are an incredible mom Julie. You are also a talented writer and I love reading everything you write. Love, Tracy Sparrow
Amy Harrigan November 13, 2012 at 04:42 PM
Julie, This is such a beautiful story of the truth many parents and children go through. You can't imagine how many people have gone through something similar. I just want to thank you for sharing both Henry's and your story. Kids now a days can be so cruel, and unfortunately the older they get the worse it gets. As a parent all you want to do is make those painful words or comments your chlidren have to hear just go away, but the reality of the situation is you can only protect them so much. I don't care if my kids are 1 or 18 the way we protect them may be different, but that urge to take all the hurt and pain away is the same and never goes away. Enjoy every minute even those frustrating ones because before we know it they are grown up.
Susan Anderson November 14, 2012 at 02:40 AM
Julie, You write this story with tremendous sensitivity and love. You are a gifted writer and you and Henry's journey would be a great book for parents struggling with similar challenges. This is story is testament of your unconditional love for Henry and motherhood. Each time I visit the I am always amazed at how far Henry has come in a short period of time. Henry is a delightful little guy! Mom and Grammy
Rebecca Kurth November 16, 2012 at 07:30 AM
Thank you so much for sharing your story, and reminding me that I am not the only mother dealing with a child who not only struggles with a speech delay, but struggles to find ways to communicate his needs (which the public doesn't always look kindly to). You have given my the inspiration needed to know that yes, someday my darling will be holding conversations with me and others. I thank god that he is a little tough, so that he's confident enough not to take any shit from bullies. God bless you and Henry!!
N. Peske March 05, 2013 at 02:37 PM
What a marvelous, heartfelt piece! I'm so glad Henry's doing well. I do think the silver lining for parents who have seen how hard their children struggle to achieve what comes easily and naturally for others is a deepened sense of gratitude and appreciation. I also believe the kids who struggle end up with gifts, too. Apraxia is a brain difference that can be so frustrating for kids. I'm so glad your family was able to access therapy for him. I'm curious to know whether it was PROMPT or another cueing therapy? I think more SLPs are being trained in these therapies. Imitating can be a problem for apraxic kids so often the traditional speech therapies have limited effect. I know SI therapy for motor planning can be a helpful adjunct for many kids too. Having been there, I applaud you for your honest sharing. It's hard to write about but so helpful for those feeling discouraged. Thank you! http://www.sensorysmartparent.com


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