Our three year old son Jack has a speech delay.  I didn’t think anything of it at first because he was my first child and I didn’t know any better.  I knew he was behind, but figured he’d start talking eventually.  I was wrong, because he didn’t.  When he was 20 months old we moved from Fort Leavenworth, Kansas to Hawaii (we’re a military family) and he still only had maybe 2 or 3 words.  No “mama” or “dada” or anything like that.  All he did was babble incoherently, and didn’t even have designed sounds for certain things.  It was all just gibberish.  He was strong willed and fiercely independent too, and the fact that he couldn’t communicate (and that he had no desire to listen either) made for some desperately frustrating days, weeks and months.  Before we even moved into our new home I set up the first of many medical appointments needed to help figure out why Jack wasn’t talking and get the ball rolling so that he could start receiving help.  We also were a little worried that he was on the autism spectrum because of a few of his mannerisms, his lack of eye contact, his occasional freak outs in public places and the fact that he wasn’t talking.   

Overcoming a Speech Delay and Our Experience with Early Intervention

The first step was meeting with our new pediatrician (we have Tricare insurance and are seen at military hospitals).  He then referred us to a developmental pediatrician.  But before Jack could see the developmental pediatrician he had to have a hearing test.  The wait for the hearing test appointment took nearly a month, and Jack threw such a fit that they never even got a good read on any of the three tests that they conducted.  I had given birth to our second child just days earlier so my husband took Jack to this appointment and unfortunately I wasn’t able to see how it went.  Jack was 22 months old. 

A few days later Jack finally saw the developmental pediatrician, who did not see any real signs of autism but did state that he had a speech delay and was strong willed and immature.  We LOVE our developmental pediatrician and watching how he observed and played with Jack during the appointment was the first time I felt at ease with this whole process.  I fully trust him and his recommendations and know that he has Jack’s best interest at heart.  He said that we could pursue private speech therapy, but knowing Jack’s personality (and the fact that I had a newborn and Hawaii traffic is very bad) it probably would not be all that beneficial.  (Something I agreed with too, because Jack was rarely cooperative with anything and most likely would not be receptive.)  We decided we’d hold off on that and just pursue Early Intervention.  He put in a referral for us to the state’s Early Intervention Program, and they contacted us pretty quickly.  I believe it’s run through a different non-profit organization in each state, and here it Hawaii it is run by Easter Seals.  They came and evaluated him in our home and we came up with a IEP (individual education plan) together to help with his speech and cognitive delays.

Jack turned 2 in November 2017 and still mostly babbled at that point.  He had a few words: “bow bow” for rainbow, “car,” and “baby” were pretty much the extent of his vocabulary.

Over the next year a teacher or speech therapist from the organization came to our house once a week to work with him.  They became part of the family.  Sometimes Jack would fight it and wouldn’t want to do anything.  He’s bang his head against the wall if we tried to sing songs.  (We believe it was some sort of sensory issue that singing/hearing kids’ songs set off.  He HATED all kids’ songs up until he was closer to 3 years old.)  He’d often hide under the table and would do everything but cooperate.  But sometimes he’d have a great time and would actually play with them.  He would never repeat anything anyone said so true “speech therapy” never really happened, but they taught us more sign language which really helped us communicate until the words started flowing.  I often asked about apraxia, auditory processing disorder or other specific speech delays that were brought up to me by people on social media, but because he didn’t have any words and didn’t even try to say things the speech therapist could never confirm that he had any sort of specific issue like that.

In January 2018 Jack finally said “mama” and “dada” and repeated a word he was asked to repeat for the very first time.  He was over 2 years and 2 months old.  Those words we had longed to hear for so long finally happened!  It was such a happy moment and even though he didn’t use them often (he’d still just scream if he needed us) things finally started getting a little better around this time. 

That same month we also signed him up for the YMCA’s preschool program.  It was just 2 hours a day, 3 days a week, but the structure and the socialization were good for him and truthfully, I needed a break.  Jack is a tough child and I wholeheartedly believe that the YMCA helped save our family because I was losing it and screaming at him more than I should have been.  So from January until his 3rd birthday in November, Jack attended part time preschool and also had early intervention services in our home once a week.  I’d always thought I’d be the kind of mom who would want her kids at home with her until they started pre-k at age 4, but every child is different and I had to admit that I could not do it all alone with Jack.  At the YMCA preschool Jack rarely followed along with what the class was doing and would often be allowed to play on his own with toys because that’s all he was ever interested in doing.  He’d complete some of the art projects they did as a class, but he’d always complete far fewer projects than his peers.  He was often disruptive and never wanted to sing songs or follow along with anything structured.  Drop off was full of drama and hysterics for over a month, but eventually that got much easier.

Jack had a follow up hearing test in April 2018 and he actually cooperated, which was a shock for everyone.  They were able to conduct the ear drum test (tympanometry) this time, something they hadn’t been able to do the first time because of the fit Jack threw.  They finally identified that his ear drums were not properly working.  The likely cause was fluid in his ears…something we didn’t know he had because he never had ear infections or acted like his ears bothered him.  Learning that he may have been hearing us like he was underwater made things make a bit more sense.

We were told to come back every 30 days to have another ear drum test.  After 3 failed/abnormal tests we would get referred to ENT so that he could get tubes put in his ears.  Unfortunately we were scheduled to go back to visit family in South Carolina for two months during this time, so this delayed the follow up tests.  We did squeeze in two test before we left, and they came back abnormal too.

In June 2018 (age 2 years and 7 months) I wrote in his baby book that it seemed like something clicked in his brain and that he was starting to say things.  His favorite things to say were “where go?,” “uh oh,” “here go” (for “here you go”), and “sauce” for “apple sauce.”  He also put his first real 2 word thought together by saying “bug head” after a dragonfly landed on his head.

When we got back from South Carolina in late August 2018 Jack had another ear drum test and it came back normal.  This was devastating news for us because it meant that we were no longer moving in the direction of tubes.  His ears must have cleared up while we were gone.  We were told that Hawaii has so much pollen and plant allergens in the air because things bloom year round that many people’s ears clear up if they leave the state.  This must be what happened for him because we were gone for about two months and he started speaking and hearing better and started putting 2-3 word sentences together.  In September 2018 (age 2 years 10 months) Jack started saying the following things (among others, this is what I wrote in his baby book though):

• “doze push” for bulldozer
• “pots” for stop
• “nas” for snack
• “kutz” for stuck
• “gosh” for goldfish
• “hopter” for helicopter
• “pi boo” for Pirate’s Booty snack
• “Coine” for Caroline

Many of the things he was finally saying were completely backwards and we weren’t sure what to make of it.

He went back 30 days after the normal eardrum test and his ears had clogged back up and he received his third abnormal ear drum test.  We were finally referred to ENT!  But then the wait took FOREVER, which was really frustrating.  More on that later.

He turned 3 in November 2018 and in most places once you turn 3 the state-run early intervention program transfers over to the Department of Education.  Easter Seals helped us with the transition and went to all of the meetings with us at our local elementary school.  We talked about Jack’s needs and he was evaluated by the school’s speech therapist, the special education teacher and it was all facilitated by the student services coordinator.  We finally all sat down at a meeting and went over the reports and it was decided that Jack did not qualify for speech because he had just enough words to not qualify, but due to his temperament and behavior he qualified for behavioral and developmental delays.  He started full time preschool at the elementary school on his 3rd birthday and he receives speech therapy 2-3 times a month and is in a classroom of only 11 with a teacher and a teacher’s aide who are true blessings to our family.  We get daily reports on his behavior and progress and Jack is THRIVING.  He learned his ABCs, how to count to twenty and countless songs within 2 or so months, and I hadn’t really even attempted any of that previously because he simply was unresponsive, disinterested and trying to teach him anything often had the opposite effect of what we were trying to accomplish (banging his head on the wall, etc.).  Things are simply clicking now that he goes to school and we are so incredibly thankful.  

Jack finally got tubes put in his ears in early January (3 years 2 months old).  We aren’t fully sure if they did the trick because his language was already starting to flow once he started school, but now (less than 8 months later) he hardly has a speech delay at all.  The doctor said that he had some sort of suction or vacuum thing going on in his ears and the tubes were able to eliminate that.  We still struggle with behavioral problems and life still is not easy (we have a meeting with our developmental pediatrician later this month), but his grasp on language now is mind-blowing, especially considering where he started and all of the hurdles he’s overcome.  It seems like he can’t control his impulses a lot of the time and because of this he hurts his little sister constantly, even though he isn’t all that malicious and he always feels bad afterwards.  They play incredibly rough (and Caroline is a tough little thing who instigates it frequently) but he repeatedly hurts her clear out of the blue for no reason and she doesn’t deserve that.  (We’re talking pushing into walls as she walks by, headbutting spontaneously when they’ve been playing nicely, jumping on her when she’s sitting on the floor playing by herself…not just rough house kinds of things.)  I don’t know what the doctor will say about that, but we need to figure out a way for Jack to learn to control his body and impulses better, because right now it’s a problem for our whole family.  It often has me in tears because it makes me so sad for Caroline and angry at Jack.  He also has trouble focusing on one thing for an extended period of time and I have to be involved almost constantly to make sure someone isn’t going to get hurt.

He will be reevaluated before he turns 4 to see if he still qualifies for the special education preschool.  I am praying he still qualifies because it has been the best thing in the world for him and I know I cannot give him all of the focused attention that our complicated little guy needs.  It would certainly be detrimental to him if he cannot attend this class anymore.  I’ll admit, the “special ed” label was a tough pill to swallow at first, but I’m so thankful we decided to go with our gut and do what was best for our sweet boy.  (One of my mom’s teacher friends also brought to my attention that gifted programs are technically “special ed” too, and thinking of it that way and removing the stigma attached to it made it an easier decision.  After all, we’re just doing what’s best for our child at this point in time, and right now he needs extra help.)  He is so much happier and less frustrated now and parenting him has gotten much easier too.  He can finally communicated his needs and desires and we can have true two way conversations.  He loves school so much and that makes us so happy.  

I’ve uploaded a video on Instagram Stories (saved to my highlights) of examples of his speech at different ages just in case anyone would like to reference it.  Every child is different but I know that hearing other family’s stories can often be helpful if you’re navigating similar waters.  It’s been a long road with many ups and downs (and lots of tears on my part) but I’m glad I can finally share our story and that it has a happy ending (at least speech-wise).  To those of you going through something similar with your children, just know that you aren’t alone.  There are so many of us out there, and I’ve messaged with countless mommas on Instagram who felt like they were the only ones going through something like this.  My advice is to make sure to love on them, advocate for them, follow your gut and get them all the help they need.  It can feel fruitless and disappointing at times but someday soon things start clicking and you’ll forget how tough it was in the beginning!

Katie Vail

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