Wednesday, January 9, 2019
Speech - our story (so far)
I've gone back and forth over posting about this, but really the majority of the people who read this blog are my mom and aunt and a few other friends who are already well aware of the situation. I've "met" so many amazing people and been able to share experiences throughout writing this blog, so if anyone reading has struggled with this same issue, I would love to hear from you.
My middle child, R, is going to turn 3 in May. He's sweet, attentive to his little sister, cuddly, kind, hilariously funny, an amazing climber, best friends with his older brother, great at gymnastics and building with blocks...the list goes on. He's currently nonverbal. For reference, the rule of thumb is one word by age one. Dalton and I were both late talkers and began speaking closer to age 2. To be nonverbal while closing in on age 3 is considerably beyond the platitudes that well meaning people try to help me feel better with "he's just a late talker!" and "he's focused on moving and climbing!". Don't get me wrong, I appreciate any and every attempt to help me emotionally, but once we hit 2.5 with no words, and also had an evaluation at a private children's hospital, I had to face reality that there was something more going on.
He was evaluated by Infants and Toddlers, which is Maryland's version of early intervention services. For those who don't know, every state is required to provide early intervention services for children birth-age 3 through the local school district. His initial evaluation was at 15 months old and he began speech services shortly after that. He has made great progress. He is now able to say initial sounds of words with prompting, and shake his head for yes and no consistently. That's HUGE! However, it's been frustrating for us that none of his progress has been saying actual words.
The big question everyone has is "why?". It's the question that has me up late at night, agonizing over everything I've done from his conception to now, wondering what I could have done differently so that this skill that comes so easily to most other children is so, so difficult for my son. .
R is still very young, too young for most diagnoses. He's been evaluated by an occupational therapist and had his hearing checked - both with a clean bill of health. His receptive language is fine. If I say "R I dropped my phone can you pick it up and hand it to me?" he can hear, understand, and follow that direction. As much as any two year old follows any direction, anyway. His cognitive abilities are right where they should be. He can articulate just about any sound. He just can't speak. And there's no simple answer why - some diagnosis, some label that I could obsessively google to see when kids with this particular issue begin speaking. FYI, it's not autism (that's the second question everyone asks). He's been extensively evaluated for autism by professionals and they've determined that's not the cause of his lack of speech.
The most likely reason, according to both public and private evaluations and services, is a motor planning issue. This means that while he is able to physically make the sounds, there is some sort of breakdown with his brain telling his mouth to move his lips, tongue, and jaw in the correct way to make them purposefully and meaningfully. That's the broad explanation and his therapist will be working to hone in on exactly what is going on and how best to address it.
With his progress plateauing and the public services just doing the same old, same old every week, we sought private therapy. We are lucky to live just a few miles from Kennedy Krieger, which is a children's hospital that provides various therapies, run by Johns Hopkins. People come from all over to get evaluated and participate in therapy there. There's a huge waiting list. He was evaluated in November and began therapy last week! He will receive weekly therapy. The best part is that they plan to work with him to identify just what is preventing him from speaking, so they can target the therapy appropriately. Equally exciting, within about two weeks he should have a communication book. This is a low tech communication device that will allow him to actually converse with us. See, he's great at nonverbal communication. If he wants milk, he will get a cup, get out the milk jug, come find me or Eric and give them to us. Even people who don't know him well usually can understand what he wants and he fits right in to places like gymnastics or YMCA childcare and no one realizes he has this special need.
However, the low tech communication device will allow him to actually talk with us. He can tell us what his favorite animal at the zoo is while we sit around the dinner table. Things like that. Going beyond just bringing us the milk to pour. It will also allow him to communicate in sentences. He will learn by pointing to the pictures to communicate "I want to drink milk", the idea being that his language will develop at an age appropriate level, even if his speech is behind. It will also increase his vocabulary.
At his evaluation, they talked about how successful kids are in using these devices in school, and how it could be adapted to use in Kindergarten, and I started crying. No one wants their kid to be the "different" one, the one you have to pray he gets a teacher who is willing to go above and beyond to include him, the one who isn't able to do what his peers do. Many people have a story of how someone they know never said a word until X age and then suddenly started talking in sentences. Up until this appointment I had thought that would be us. I didn't even realize how much I believed that until faced with the idea of him being unable to speak in Kindergarten. Of course he could make huge progress and be dismissed from speech by then, but I also need to be realistic that this may not be the case and we may have a long road ahead of us. I think sometimes people are so focused on sharing these hopeful stories with me, and again, with the best of intentions. It's great to be optimistic, but it's not great to live with your head in the clouds and not be realistic about what is to come. I know he will speak, and I know Eric and I will do absolutely everything we can to help him get there and help him communicate in the meantime. But I don't want to live in a fantasy world where it will just happen magically one day.
Another sort of confusing thing is that R has this need, but in the special education world, he's "not needy enough". This is what I've been told when I have pushed to get him more public services (we are just gearing up to fight that battle as he approaches age 3, which is when children are old enough to get an IEP). People are quick to remind us "yes, but his cognitive abilities are fine!" "you're lucky he doesn't have X issue as well". Yes, and that's wonderful, and we are grateful. I hesitated even using the term "special needs child" in this post, because I feel like it is stealing sympathy from those more deserving of it. It's not a competition though, and I'm not going to back down seeking out anything and everything to help my child just because there are other needier children as well. He can't speak, and that inability is only going to impact his life more and more every single day.
I haven't used his name or picture in this post so that it won't come up on a google search one day (I read GOMI too much). Not that it's shameful or anything, but I think it's up to him if he wants to fully share one day.
So that's where we are at. On New Year's Eve, as we did the kid's Netflix countdowns, he happily joined in the counting, saying "Ah" for each number right along with us. I'm feeling very hopeful about his new therapy at Kennedy Krieger and just praying so hard that on NYE 2019 he's able to truly count with us.