Right around two years ago, I shared the following on my blog and down believe you’ll find my musings from present day:
I’ve been really moved by the pieces of writing circulating on the internet about children with delays in their speech. So, I thought I would share some of my experience today.
When your kid is living with any kind of speech concern, let me assure you everyone who knows it will have a story to tell you about their cousin’s brother in law’s daughter, who LIKE totally outgrew hers. Most of the time, it won’t be treated like a legitimate concern, especially if they are still pretty young. I’m a positive person, I can look into the future and see Liam speaking clearly when he announces his candidacy for presidency. I can also look into the past, and see the progress he’s made towards his goals from the time he started speech therapy at 19 months old. In between those times though, I’ve also seen and felt a lot.
I’ve seen my young son try to share his excitement with me about something, I absolutely COULD not understand. “Jesus Pizza?” I asked. “No!!” He screams back. “You want to go to church?” “Jesus” “Cheese Pizza?” frustrated, he just retreated. It’s been over two years, and I still cannot savor his joy for what sounded like “Jesus Pizza” to me.
I’ve seen Liam share a story with a friend, only to be ignored because the kid had no clue what he was saying. I’ve watched his face rise and fall when he realized no one around him could understand him clearly enough to carry on the conversation. I’ve observed other children tell him he doesn’t know how to say words right. I’ve seen him raise his voice, nearly screaming, in an effort to make the words more pronounced.
I’ve sat in meetings where I’ve been informed how a child with a speech delay with likely struggle academically. I’ve privately wept, because I’m not enough to just fix it. I’ve criticized myself, regretful I hadn’t read him more books in infancy. I’ve wondered if I let him watch too much television, or if my thick Southern accent made it harder for him to understand me and learn how to say the words. I even let myself recall a time when I was in first grade and encountered my first classmate with a speech impediment. Was I unkind to him? I don’t think so, but maybe I was and the universe is seeking its revenge. I’ve doubted myself, bashed myself, and neglected myself in the hope he might learn three words one week. I’ve envied my friends, I’ve studied their parenting for any flaws in my own. I’ve read parenting books, blogs, and forums about children with speech delays. I’ve Googled famous people with speech concerns. I’ve devoted hours upon hours to educating myself about how to best support my child and give him the best early intervention possible.
I’ve been supported by speech pathologists, people more patient than I. I think it’s nice they have therapist in their job description, because they’ve been a source of therapy to my family in ways they probably hadn’t signed up for. I’m so thankful for their support. Sometimes I don’t know who they help more: Liam or me. I’ve never met a SLP who wasn’t blissfully positive and helpful. I think everyone should have their own SLP, they’re smart, kind, and a source of constant encouragement. I’m thankful for them everyday.
I’ve imagined worst case scenarios for his future. I’ve felt the warmness and redness build on his cheeks when he tries to read a word and does it incorrectly, leaving his classmates in stitches. I’ve heard him called cruel names, and I’ve wanted to have a firm conversation with the parents of the accused. I watched my younger brother get ridiculed, and while I interjected as often as I could, I know the words had lasting meaning in his life. They defined him by sad accident, and they withered away at his self esteem.
I often feel guilty for being sad for my son. I know we are blessed beyond belief with his overall good health. I try to see the positives: the wonderful support staff we are able to provide, being able to stay home so I can make each and every necessary appointment with minimal life disruptions, being able to afford a nice school that caters specifically to his needs. It’s just some days, I want more, I want EASY. I want an easier ride for him. I want everyone to know how funny he is. I want him to know he’s heard, understood, and his thoughts are meaningful. I want the world to delight in his knowledge of animals, weaponry, and dragons. I want my incredibly social boy to be able to interact as I know he’s so desperately trying to. I want him to feel confident, smart, and as great as he is in my eyes. I don’t want things to be harder for him. I’m selfish, I know. Adversity builds character, I know. I know, I know all the things you’re thinking. I think them too.
The reality is with each thing I see him overcome; each milestone he defeats. When his SLP comments on his expansive vocabulary. My heart swells, and I’m comforted knowing he’s better than he was yesterday. He doesn’t need me to make his life easier, he will prosper on his own. He’s strong, smart, and resourceful. He knows I love him beyond measure. I can free myself of the guilt that I haven’t done enough, and just let us be.
Two years later:
It’s interesting that we’ve moved to a new state and in a lot of ways given our young family a fresh start. Here, people don’t really grasp the number of appointments I had to take my baby to. I am more carefree and present, I’m less rushed, able to carry on a conversation because we don’t have surgeries to schedule, insurance companies to talk details with, meals to get in the freezer so I can focus on helping him recover. When Liam was a baby, he had chronic ear infections. We never slept, and the memories of his first year always feel like they were spent in a pediatrician waiting room. Honestly, so do Sawyer’s, because I spent much of his first year on earth at the doctor or at appointments for Liam. We had a dear lady come to our house at 8:30 am on two mornings a week for Liam’s speech therapy. In just under six years, Liam has gotten ten minor surgeries. He did two speech therapy sessions a week from 19 months old after it had been discovered he had lost a bit of his hearing from fluid behind his ear drum. We also had to schedule bimonthly appointments with an occupational therapist because his vestibular sense had taken a a hit from the vertigo that accompanied that kind of fluid build up over a prolonged period of time. He’d often get nauseous when he’d hear loud noises or walk into stuff or trip over thing. We were blessed that as he aged out of the early intervention services in Indiana, a spot became available for a child who needed services at a remarkable speech and hearing preschool. There should be more programs like this one, because it was truly a saving grace. There he was able to do his speech services with students studying to be SLPs, and parents could take advantage of discounted rates. I found these students always treated Liam like family, and they poured into him as they fine tuned their skills at the graduate level. It was really cool to have such a community of care. Once we got a handle on his health, specifically getting his tonsils out to help with his sleep apnea, I noticed a dramatic shift in his attention span and speech.
When he finished the program last May just weeks before we moved to Oregon, I felt sad to end that period in our lives. He was clearly “all caught up.” When he talked to peers, it was with vigor and clarity. His confidence was transformed! Remember how I worried he’d never read? Well, he’s reading now. He is really great at math and building with LEGO bricks. He is one of the most encouraging and emphatic five year old children I have ever met. I attribute this to his own journey, and the adversity he dealt with at such a young age!! I’m able to reflect now and see that I didn’t fail him, there was nothing I could have done better or differently. That was just a chapter in his story, a part of his journey.