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.

16 comments:

  1. Thank you for sharing! It sounds like you and your husband are advocating hard for R. I am hopeful that he continues to get the help he needs and make progress.

    ReplyDelete
  2. Hugs to you. With you guys in his corner your son will thrive for sure!

    ReplyDelete
  3. As a fellow mom, I have tears streaming down my face -- not bc of R's diagnosis (or lack thereof) but because I empathize with your pain and how badly you want to protect your son. I am sending you so much love and strength from California. Whatever road lies ahead, I know he has a fierce champion in you, mama. XOXO

    ReplyDelete
  4. As a full disclosure, our son actually DOES have autism, but his primary issue is expressive language, and he didn't speak a single word until well into his fifth year. PECS (the low-tech communication book you're describing) is what finally got him talking. It's an option I think a lot of people forgo because they think a higher tech option, like an iPad, will be better, but I've seen much more success with the PECS option. The added benefit is the motor planning component that comes into play with having to choose and exchange the picture for what the child wants, and then later on, forming sentences with different pictures. Lots of luck and love to all of you! It's a difficult and scary situation, but you're doing the very best you can for him.

    ReplyDelete
    Replies
    1. Oh this is so wonderful to hear. Thank you so much for sharing your story. I’m so happy it was helpful for your son.

      Delete
  5. Thank you for sharing. What a difficult thing to deal with. My little boy has some health issues and I completely understand that feeling of “sick, but not sick enough”. Part of it is denial, part of it is that he is very lucky, compared to other children. Way to many words to say, I understand a little bit.

    ReplyDelete
    Replies
    1. Ugh it’s hard. That feeling of well so and so has it worse, I should be thankful it’s not that bad for us. And i am, but I still think my son deserves every possible chance! I’m sorry to hear your little boy has some health issues. Thank you for sharing and understanding.

      Delete
  6. Thank you for sharing! I’m so sorry you guys have to go through this and it must be frustrating not to have a clear diagnosis but it sounds like you’ve done a great job advocating for him. Sending hugs and good thoughts <3

    ReplyDelete
  7. Thank you for sharing this with us! This must be incredibly stressful for you, but as an outsider I have to say that he's so lucky to have been born into a family who has the love and the resources to advocate for him and provide the support he needs. You guys are awesome parents (well I don't know you in person so this is me judging you solely on your internet presence, but still). Sending you all sorts of good vibes over the internets.

    ReplyDelete
  8. Thank you so much for sharing this! I have an almost-3 year-old son with a speech delay and motor planning issues as well. We used a PEC system briefly with him and he actually started talking shortly afterwards, at about 2.5. He’s still way behind where he should be for his age, but he’s made a ton of progress in the last 7 months. It’s so hard when your child doesn’t follow the “normal” path. Hopefully Kennedy Krieger will be able to help, but either way just remember that you’re a fantastic mom and even if he never fits into the traditional mold, you will figure out your own “normal” as a family and find a way to make it work.

    ReplyDelete
  9. R is so lucky to have great parents like y’all. Sending y’all lots of positive vibes and love (in a non creepy internet reader kinda way).

    ReplyDelete
  10. We adopted our oldest daughter at 8.5 months from China - the time period when kids begin to mimic sounds and vocalize. In fact, they say if you plop a group of 9 month old kids in a room, you can identify generally where they are from by their babble. Anyway, I degress. Both Mason and the little girl adopted from the same orphanage experienced speech delays. Mason's main issue was word formation and her friend had a speech delay and stuttering issues. We had her evaluated for the first time when she was 3 as we knew she would qualify for an IEP. The speech pathologist told me that when we walked in the door, he 100% expected to tell as to chill out and stop worrying. But the kid mispronounced 30 out of the 35 words in the flip book. She could make the sound, but not at the appropriate place in a word. So she would pronounce "cake" like "take" and "talk" like "caulk." We began weekly therapy and she even qualified for more intensive summer work. By the time she entered kindergarten, her IEP hadn't caught up with her and her teacher could not believe she had an IEP. Bottom line, advocate for your kid, which you are doing! Just think of the children with problems whose parents refuse to acknowledge them! My husband's nephew needed OT as a kid but his parents simply made excuses for his delays instead of ignoring them. Like he didn't want to ride his bike. What kid doesn't want to ride his bike with his friends but prefers to sit on the curb and watch? He was 12 before he could balance and now as an adult, the issues have compounded. I know you will work through this with patience and love!

    ReplyDelete
  11. So many thoughts and prayers for you, R, Eric, and your family <3 You are a supermom (and super family)! You are taking steps for R's progress and success that are immeasurable. Yes, numbers of consonant-vowel combinations, words, and phrases are all markers for progress. But, the immeasurable step you are taking is to focus on functional communication. PECS and low-tech communication strategies will help R engage so much more in the world. PECS also has an established research base of promoting verbal-vocal speech. KKI is an incredible place that can provide your family with an abundance of therapeutic resources and advocacy recommendations! Lots of cheer and hope for you all <3 Becca ~ just a former broomball and kickball teammate and former KKI-CARD research clinician ;)

    ReplyDelete
  12. Thank you for sharing your story so far! It must be so challenging but it sounds like things are really moving in the right direction! think that R Has the best parents in the world for doing so much to make sure he’s getting all the help that he can and needs. And he does deserve every last bit no matter if other kids have it worse off! They all deserve as much as possible to help them!
    I hope the new year brings progress and peace to you and your beautiful family.

    ReplyDelete
  13. You write so beautifully, clearly, heart-warmingly, relatably, and I know that’s not the point, but I still wanted to mention it. I admire your strength and courage and realism and efforts, and heart for you beautiful babies and for this current issue! You are an amazing mama and I am grateful for your sharing and look forward to reading about the progress! Much love and prayers your way!!! I wish we lived closer...

    ReplyDelete

Thanks for commenting! Comments make me probably more happy than they should.