navigating having a 2 year old who does not speak — the emotional impact and steps we took to support our child

my son just turned 2, and the only word he says is “mama”. yes, it is as heartbreaking as you think it feels like — especially when you have in your head the expectations that your child will meet, the milestones that they will obviously touch. except when they don’t.

IN HOME SPEECH THERAPY —

we had slowly seen a decrease in his words he used to say (dada, up, down, bye, ball, more, uh-oh) , and actions he used to do (give kisses, wave bye, pretend to talk on the phone). and the thing that kept punching me in my gut, mama intuition maybe — he no longer responds to his name. or if he does, it is after so many attempts, getting right up in his field of vision, and interrupting whatever he is doing.

we had been in contact with our pediatrician and during his well visits for the past year, these were concerns that kept popping up. and while our pediatrician said that yes, this delayed or even lack of language isn’t typical for his age — he left it up to us, if this was something we wanted to look further into and pursue a referral.

about 2 weeks before his 2nd birthday, i called our pediatrician and asked for a speech referral. he was able to call in that same day to our school district to the SLP special education program, and i got in contact with someone there.

we were able to get a few dates scheduled for the folks at our local school to come out to our home and do some assessment with Revan — playing with toys, asking him what specific pictures are, what his capabilities are. they tested our son specifically in 6 different areas (these aren’t exact, but what my pregnant brain can remember in this stressful process) — social, motor, cognitive, verbal, language, aaand something else. he had to score 1.25 deviations below the standard in one of these areas to be accepted into the free program through our school district.

after about 3 separate meetings (all at our house, which was so nice! the dog literally thinks our new SLP friends come to see her each week), they told us Revan was very easily accepted into the speech therapy program!

THE EMOTIONAL JOURNEY —

and what i didn’t expect is the raw, emotional part of this journey. it’s like i’m mourning for my son’s childhood, what we expected him to be able to say, communicate and do. and at the same time, why am i so grateful that he didn’t pass his speech assessment? it is because it validates all the concerns and hesitations i’ve had about his verbal communication?

and the best way i can describe this feeling is drowning. you gain a certain level of confidence when you grow as a parent — knowing your child, who they are, that they feel safe and comfortable in your presence. and for me, this was massive in my pumping journey — i gained so much confidence in myself as a human, and as a parent who has the pressure of feeding her baby, and doing it well.

but we are severely out of our comfort zone here. we are following the lead of the folks who are professionals in their field, and honestly that is terrifying. yet also incredibly comforting in the exact same breath.

check out the instagram post that so many of you identified with, where i shared a lot of our start in this journey!

NICU FOLLOW UP AT THE UNIVERSITY OF MINNESOTA —

Revan spent a week in the NICU from the day he was born, and that also means we have an incredible team of PTs and doctors that have followed him and checked in on him since birth at the University of Minnesota. i have more about his history and birth story in this blog post if you want to read more about our unfortunate traumatic start as mama and babe!

we had a follow up with our U of M team around his 2nd birthday (23 months was when we had his appointment scheduled), and they confirmed a lot of these same concerns. the biggest thing they voiced to me at that appointment was that it is not normal to have a child lose verbal language. especially when it came to looking at his test scores historically up to this point —

Revan has up to this point been a very advanced kid, especially when it comes to his gross motor skills. rolling at 3 months, walking at 9-9.5 months — at his 5 month check up the doctor literally told me “we don’t see this kind of ability in children until 8 months or older!!!” like talk about a determined and stubborn kid (he gets it from his mom, i tell ya 😉)

his scores historically for these assessments they give him in person have been upwards of 100 and over. but at his 2 year follow up, he scored 80 — and they consider anything under 85 as below average. so not only was there a general concern with how he scored, but compared to previously, this is not normal for him as an individual.

our doctor at the U of M referred him to a few different specialties and suggested we do some more with Revan to see if anything deeper is at play. again they emphasized that children don’t lose verbal language for no reason.

• autism spectrum medical testing
• neurological assessment
• clinical speech

we have an appointment to start clinical speech this coming week! we were encouraged by both our in home speech folks and our NICU team that we can absolutely do both in home speech and clinical speech in tandem. in fact, it will hopefully help him to be associated in both. and we love a community that works together instead of against each other!!!

for Revan’s neuro assessment, the soonest we could get in to see a specialty team in the Twin Cities, MN wasn’t until February. and this was WITH an immediate referral from our NICU doctor. because our little guy has been in the NICU track, and if our doctor makes that referral within his first 24-25 months of life, he gets on an accelerated track for these referrals. as our doc explained — autism spectrum testing typically can be up to a 2 year wait 😳 if it isn’t coming from her office!!!

THANK YOU —

i have to say thank you to my whole community who showed up, offered love and support when i was sharing the raw feelings about this journey. as we have heard time and time again — early intervention is the best to be able to get support for your child if any of this sounds familiar to you. know that you’re not alone, and there are resources available for your family —

• the first step is to call your pediatrician or care team to communicate your concerns, and see what the referral or recommendation is
• if you are not feeling seen or heard from your pediatrician, i believe most school districts have a special education speech program that you can inquire about
  

P.S. if you’re in the Twin Cities, MN, here are two autism testing facilities that we were referred to —

• Fraser — 3333 University Ave SE, Minneapolis, MN 55414 | (612) 767-7222
• Masonic Institute for the Developing Brain — 2025 E River Pkwy, Minneapolis, MN 55414 | (612) 365-8400

does any of this ring familiar to you? has your child gone through any speech services? i would love to hear your experience or any questions you have ❤️

xoxo, Bethany | Certified Lactation Counselor | Your Overproducing Exclusively Pumping Mama