Yesterday, Xavier graduated speech therapy!! It was a day for celebrating how far he's come, how far he (and we!) have worked and how faithful and GOOD the Lord has been through it all. We walked downtown and got ice cream to celebrate - even though Xavier actually has no idea he's even BEEN in speech therapy, let alone graduated. We know, and we wanted to celebrate.
I get asked often on Instagram how I decided to get him evaluated for speech therapy, what our journey was, etc. and decided to just write it all up here so I have something to reference! So, here goes!
To start off, I suspected Xavier had a tongue tie from early on. Like, weeks-old. Nursing was incredibly painful, long past the age when it should be painful. I never mentioned the tongue tie hunch, though, because I was a first time mom who spent too much time googling and I thought I was being dramatic. Also, postpartum depression and anxiety does crazy things to a mama's mind and I just thought everyone would tell me I was being ridiculous.
Turns out, I wasn't being ridiculous. More on that in a minute.
Even as an infant, Xavier didn't babble much. I only know that now that I have a second infant and can see firsthand what normal baby talk sounds like. I didn't think anything of it with Xavier, though, because #firsttimemom. Also I was too worried about his crawling and walking and eating and sleeping and every other fifty zillion things you worry about. Speech wasn't even on my radar.
At his 12-month appointment, he didn't have the ten or so words that babies "should" have at that age. I say "should" with heavily emphasized quotation marks because BABIES ARE DIFFERENT and BABIES DEVELOP DIFFERENTLY and while I understand the need for charts and benchmarks, I think nowadays moms (me included!) stress and freak out unnecessarily about them. The pediatrician just said he might be a slow talker and to not worry.
Then at 14 months...still no real, understandable words.
None at 16 months, either.
It felt like every month I just kept saying "surely this is the month his speech will explode!" Super encouraging friends kept telling me that their kids were late talkers and went from no words to overnight talking in sentences, and I was sure that's what would happen with Xav. And at the same time, I had this niggling gut feeling that something was off. I could tell that Xavier knew so many words. His comprehension was off the charts, he could very clearly understand what we were saying, picked up words easily and could tell us what he wanted in his own way. It seemed like it wasn't that he didn't WANT to talk, it's that he COULDN'T. Like he was having trouble getting the words out. Which, as it turns out, was exactly the issue.
At his 18-month appointment, I had the nurse practitioner check for a tongue tie, because I was pretty convinced he had one. Ding ding ding, score one for mama! He definitely had it, so we were referred to an ENT for further evaluation. At the ENT appointment, they did a hearing check just to rule out hearing issues as a cause for the speech issue, and I was super surprised when they said that Xavier had low hearing, which was likely causing the speech delay. They recommended he get tubes in his ears, and said they'd fix the tongue tie at the same time. Again, my mom radar went off, and I just had this strong gut feeling that he did not have a hearing issue. The kid could hear sirens before I could, could hear airplanes in the sky way before I ever did. I really did not feel like the hearing test provided by the ENT was accurate, and I wanted a second opinion.
We talked to our chiropractor who we LOVE and asked him what he thought. He referred us to a dentist who specializes in tongue ties, and said he would wait on the ear tubes. He said getting the tongue tie fixed might resolve any hearing issues (if there were any to begin with) because the tongue no longer being inhibited would change the mechanisms of swallowing and such, which all affects fluid and stuff in the ear. Crazy how it's all linked! Ultimately, although ear tube surgery is fairly minor, I didn't feel comfortable doing it without trying this other option first.
We had Xavier's tongue tie fixed in in the summer of 2016. I think early summer maybe? We waited a few weeks/a month to see if fixing the tongue tie helped with his speech, and although there was minor improvement, it wasn't enough for me. I knew there was something going on and I wanted a professional opinion. We got a referral from our pediatrician for First Steps, an early intervention program available in our state, and set up an evaluation. Because First Steps is federally funded, the eval was totally free! Two therapists came to our house one afternoon, played with Xavier and asked us a bunch of questions. They spent the hour evaluating him for all the services First Steps offers (all kinds of therapy, not just speech) and determined that he was great on all fronts, but definitely qualified for speech services.
From there, we chose a speech therapy provider to work with, and set up regular therapy to take place at our home every week, once a week.
I was so relieved after his evaluation, because I knew we were on the road to helping our sweet boy be able to communicate. Relief and hope quickly gave way to overwhelm and anxiety, though, when after his first therapy session, the therapist said, "don't freak out, and definitely don't google it, but I suspect he has apraxia."
I googled it. And I cried. And I cried some more. Suddenly it seemed like this wasn't going to be a quick few months of speech therapy to catch Xavier up. Childhood Apraxia of Speech is a neurological condition and it was going to be hard work to help Xavier learn to talk clearly. Basically, the best description is that for kids with apraxia, the pathway from the brain to the mouth is bumpy. The kid knows what he wants to say, has all the words formed in his brain, but the mechanics of verbalizing it is hard. Xavier would talk in what seemed like full sentences - we could tell he was using all kinds of inflection, asking questions, etc. - but it was all babble that we couldn't understand. Kids with apraxia often talk mostly in vowels, and this was true for Xavier. Most of his talking sounded like "aaaa eee aaa oooo uuu aaa?"
He was too young to officially diagnose, but he had all the signs of apraxia and I'm convinced that's what it was. We started weekly therapy in August with an AMAZING therapist, and saw small improvements right away. Like, really small. Him making a new SOUND for the first time, a sound that other kids had been saying for literally a year. As I researched more about apraxia, I found out that the recommendation for best results is therapy 3-4x a WEEK. Xavier was only getting it once per week. First Steps is unable to offer therapy more than once a week, so we decided to pursue private therapy for a few months to see if that helped. Starting in October, he went to a private clinic once a week, and also had his First Steps therapist come once a week. I think the combination of one session happening in our home and one in the clinic setting, and two different therapists with slightly different approaches, was super beneficial.
He did private therapy until mid-January, when the therapist said she felt comfortable discharging him. She said some of my favorite words ever - that she no longer suspected apraxia for him. She was amazed at how quickly he progressed.
We continued to do weekly therapy through First Steps until March of this year, and then moved to every other week. He had his last session yesterday, and his speech therapist said she didn't think he needed it any longer. I'll never forget her walking out the door and telling me, "he is ABSOLUTELY a success story. Just amazing the difference."
Xavier's journey with speech taught me so much about surrendering my plans, leaning into hard things and trusting that God will show up no matter what. I'm so proud of myself for digging in, getting my hands dirty and working every single day for and with Xavier. And man, am I proud of that kid. For never giving up. For dealing with the frustration of grownups not knowing what he was trying to say. For having to repeat himself over and over and over again. He showed so much determination and grace, and I'm so lucky to be his mama.
If you're a mama dealing with a speech issue or wondering what to do, here's what I would say: DO THE EVALUATION. Every single state has an early intervention program thanks to the federal government, and the evaluation should be free. You shouldn't need a referral from your pediatrician but if you DO need a referral, just call your doctor and ask for one. You don't need to explain yourself. Your mama gut is enough. Don't worry about being "that" mom, the over-anxious mother hen (that was so me!) You having a gut feeling is enough. Honestly, it's a win-win. If you do the evaluation and they say your child doesn't need speech therapy, great! You officially know and can just move forward knowing they're learning to talk on their own time. You can also always pursue a private opinion if you aren't satisfied with that. And if they do say your child qualifies for speech services, great! You caught it early and are giving them the BEST chance at catching up. Win-win.
I'm forever grateful for this journey and all the things my son continues to teach me. What a ride, this motherhood gig. What a wild ride.