An Update on Tyler's Language Delay

While I'm very vocal in real life, I'm not all that vocal on here about the challenges Tyler faces. I did brush it quickly when I did his two year old post, but it's such a part of my life, I haven't really made time to address it here.

We've known since about 18 months that Tyler had a language delay.  He didn't say words. He made lots of screeches and gestures, but not words.

When we spoke to the pediatrician, he said there could be tons of reasons why he isn't talking, ranging from not feeling like he needs words because his needs are all met to something cognitive. We were quickly able to rule out any hearing issues and I told the doctor that Tyler had great receptive skills, even able to assert when he wanted something, but he lacked the vocabulary necessary to say it out loud.

In January he was evaluated for services.  He tested at or above his age level for every category except communication. But even in communication, it is broken down into receptive and expressive. His receptive was so great that it pulled his overall score to a 77, which is exactly the score he needed to not be eligible for services. Thankfully, the clinicians saw the discrepancy between his receptive and expressive and offered us services under a "clinician's judgement" decision.

Tyler began working with a clinician in our home once a week, playing but learning.  She would prompt him to make the sound before she would give him a puzzle piece, make him make a sound for which color he wanted, and encourage him to try, even if it wasn't the full word. Tyler loves her, and would run to the door to meet her.  He worked so hard, trying to make every sound but still came up short many days.

We added in a 2.5 hour play group every week, at a center with other kids to help promote the use of speech. A clinician had said that because he knew every need would be taken care of at home, and because we knew what all his noises and gestures meant, he didn't need to work as hard to get what he wanted or needed at home.  By putting him in a playgroup, he was forced to try more, to talk to other kids his age, to work with teachers who didn't know what his noises mean, even though David was present. He started picking up sign language easily.

About a month ago we added in a second clinician, a speech and language pathologist who works with him once a week on sign language. She comes to the house, plays with him and his toys, and like the other clinician, encourages him to use his words, make sounds, and is integrating sign language into his "vocabulary".

He can now sign 6 words/phrases: more, drink, I want, work, play, and all done.
Which is just about how much he can say out loud.
Tyler says: Mama, no, up, pop (for popcorn, bubbles, and literally popping something), hot, and giddyup.
His almost words are giggy (kitty), woof woof, purp(le), and diddy.
He's gotten so much better with sounds like mmm, ddd,  pah, bah, and nah.

It is frustrating to see him around kids who are much younger than him and hear them string together multiple word "sentences", but I know he's trying his hardest.

Unlike normal services that are tested annually, a clinician's judgement diagnosis requires retesting every 6 months. We had our testing last week and he technically no longer qualifies.  Where he received a 77 in communication before, he now has an 88.  I'm thrilled he's improving but he's still not where he should be for his age. The discrepancy between his expressive and receptive is still great though, so the clinician's want to have him approved until clinician's judgement again. Unfortunately, the state does not usually allow a second "clinician's judgement" call. Which means in order to get Tyler services, the clinicians are submitting a waiver, trying to prove Tyler still needs the support.

And until the state makes the decision on whether Tyler should get services, he will continue to receive them, but it scares me to think someone who has never met my child is going to have the power to say if he should or should not still be getting services.

I know it hard for him, but we're powering through and I know he'll be so successful regardless, but having these services will help him so much. It's hard as a mom, waiting for an answer that your child needs when you have no control over it.

UPDATE: Tyler's waiver was approved so we get 6 more months of services! Yey!

xo, Heather