There are things I think you prepare yourself for mentally as a parent. At least I should say I did. I dreamed of the snuggles, the hands to hold, the little squishable lovely newborn. I thought of milestones he would reach- rolling, crawling, walking. I thought about the bumps and bruises, the terrible twos and even harder threes. My mind even wandered into that dark place of what if something happens to him. But there was one thing that never crossed my mind as a hardship I would have to face; yet here we are.
Kellen was the ideal baby. Seriously. It doesn’t get much better than this kid as an infant. He rolled with it, didn’t seem too affect by schedule changes, was sleeping through the night at 6-7 weeks, smiled, laughed, loved and snuggled. Everywhere we went, people would say, “he’s such a good baby!” or “you know you won’t get this lucky if you have another!” He rolled at 3 months, sat up at 5.5 months, crawled at about 9 months, and walked at 11 months. It seemed to us that he was hitting all the milestones right on target.
It wasn’t until Kellen was about 18 months that I started to get a little concerned. You see, for as amazing and incredible as this little human beside me was, he wasn’t seeming to make a lot of sounds. At his 18 month appointment the pediatrician told us, “don’t worry about it. He’s a boy. It’s okay.” And so time continued to pass… again with this amazing, incredible little boy moving forward…but still not finding his voice. Just before his second birthday, we decided to contact our Early On intervention program. I asked them to come to our house and do an evaluation on Kellen’s speech. Meanwhile, I wondered… he had had several ear infections- did he need tubes? Was he hearing okay? We took him in for a hearing test and they felt it was fine—and more so that there was not fluid in his ears. I will say, I was disheartened to learn this. It meant that this was not going to be a quick fix. Early On came out and their SLP spent about 2 hours with us at our home. We had filled out an in depth parent questionnaire. They observed Kellen and had him perform many developmental tasks. He did just fine with all of them… but speech.
Based on their findings, they suggested that Kellen receive speech services 2 times a month. We debated on whether to go forward with this. Looking back now, my reasons for hesitating were silly. The biggest issue came in the form of 3 letters… I-E-P. In the education world, this is a document that is associated with special education services (IEP= Individualized Educational Plan). I hated the idea that my not even 2 year old would have an IEP. Stupid, shallow, in hindsight I know. I just was scared of a stigma it would place upon him. I kept thinking…maybe I was overreacting? Maybe he would get it. Maybe he was just a late bloomer.
Early On’s Motto is a brilliant one: “Don’t worry but don’t wait.” I kept running this over and over in my head. I thought about it on the flip side. If we did nothing, in 5 years, would I look back on this time in our lives and wish we had? Dave and I had conversation after conversation about it. I cried more times than I should have. And yet, two things kept coming up. One was the fact that choosing to get him speech services (even if he did all of the sudden blossom and take off talking) would not hurt him and the service was free. The second thing was something that Dave said to me. We were having yet another conversation one evening about whether or not we should do anything or not and he looked at me and said, “Why wouldn’t we help him if this is what he needs? Are we going to love him any less?” And of course the answer to that was absolutely not. We went ahead and signed the paperwork and shortly after Christmas break and his 2nd birthday, Kellen started receiving speech services through Early On.
I met with his therapist and she was so real with me about my concerns and hang ups. We had a great conversation and I felt that she really valued my role and opinion. She started seeing Kellen twice a month; once while he was at daycare and once at our house after I got home from work. We had his two year appointment at the pediatrician. I was nervous and armed myself for the onslaught of concern from them on his lack of talking. The doctor asked me if he was saying many words. I told him no and he replied, “That’s okay. He’s a boy. He’ll get it.” I was surprised. I told him we had requested Early On’s service and was told that was it was a great resource. I walked out of the
appointment wondering…should we have waited? Was I overreacting?
A short while later, we some frustrating news. It came to light that the therapist who was working with Kellen was actually an OT (occupational therapist) not a SLP (speech and language pathologist). While I had grown to really like her and appreciate her willingness to always handle my millions of questions and concerns, I also was floored that my child was not getting the correct type of services he needed. I spoke in depth with friends who were SLPs, with people at my work, and everyone agreed… it just didn’t make sense. Why was an OT working with him if he only needed speech services? In the moment, my haunches were up and I was very upset. I contemplated going to the “higher ups” within the organization and complaining. Yet, I remember telling myself that as a teacher, if a parent had a concern, the most frustrating thing for them to do was go above me first (i.e. go directly to my principal) as opposed to coming to me first.
So I sought out the OT and asked questions. I asked a lot of questions. It turned out that their program operated on the idea of , “the whole child” and so any of their specialists could technically work with any kids. They then would meet and collaborate as a team to offer support to one another (for example the SLP on the team would offer support to the OT for things to do with Kellen). I was feeling a bit like I had the wool pulled over my eyes. This has not been clearly explained to me prior to signing paperwork. Had we known that the person who worked with him might not be a SLP, we may not have gone forward with it. I likened it to the fact that yes- I am a teacher, but my BA focuses on English and my MA was in Reading and Literacy. Could I tutor a child in math? Yes. Was I the very best choice? No. So… we were back at square one. The trouble was, we truly did like the OT working with him and really did thing the Early On program as a whole was a good one. But, one of the biggest things I have learned through this process was that I have got to be an advocate for my kid. Especially a child like ours, who cannot speak for himself; he needs someone to be his voice, to fight for what is best for him. I remember having a candid conversation with the SLP at my school and I said to her, “I don’t want to be that parent.” She looked at me and said, “You have to be that parent! Be that parent!” Through her help, I got in touch with a private speech therapy place. I shared with our Early On OT that this was the route we were going to go and she wholeheartedly agreed that it might be a great step to take for him. We did opt to continue with the Early On visits however. Once I got over it all, I realized that at least he was getting some services at this time, which was better than nothing.
We made an initial visit with CTC (private therapy). We shared our concerns and we talked about what their program might look like. Through our initial visit, they felt that Kellen very likely could qualify for services and we set up a time for them to do an observation on him. We also had to tackle insurance coverage. Because it was a private therapy, we were unsure of what insurance would allow. We learned our insurance would cover partial costs of up to 30 visits per year (if he qualified for speech) and we would pay a decent amount for each visit until our deductable was met.
Prior to our observation with Kellen, CTC suggested we do another hearing test…just to rule out any other factors. So we went back in to the hearing clinic. They checked his ears for fluid and they were fine. Then we went into the sound booth like before and he sat on my lap. They played different sounds on each side and in front of him. I was told to sit very still and try not to react to the sounds myself. I sat there with him on my lap- they played a sound on the right- he turned, in front, he turned, to the left, he didn’t turn, to the front, he turned, to the left he didn’t turn, to the right, he turned, to the left, he didn’t turn… time after time they did different pitches, etc and 95% of the time, he ignored what was on the left. It was enough for me sitting there, with him in my lap going… okay… okay… this is it… he can’t hear out of his left ear… We came out of the booth and honestly expected her to sit down and have an in depth conversation with me about what we do now. Except, we didn’t. She told me that she thought he was too smart and just choosing to ignore the sounds on the left. That he had figured it out and was showing some defiance by not looking that way. She did another inner ear test and felt that it was fine. I walked out of there confused (and for weeks I would sit behind him and snap behind his left ear haha). We did follow up with a pediatrician but they said that even if he WAS experiencing hearing loss in his left ear (which we don’t know for sure but know it’s not full loss in that ear) that because he had at least one perfect hearing ear, his speech should not be affected from it regardless.
Fast forward a few weeks to our formal observation at CTC. Dave came with me and unlike the Early On observation, this one was done at their building. I was very unsure of how this would go. Kellen is often slow to warm up to others and can be very shy. I wondered how well he would do in this new environment with a new person. We went to a room and a SLP conducted some developmental tests, asked us lots of questions, had us fill out questionnaires, and observed Kellen in action. We both felt very positive about the SLP and the therapy place. We were told they would relook at and compile information and then we would be called back in for a consultation again where they would recommend a course of action.
Meanwhile, the OT was still meeting with Kellen and one evening at our home she brought up a word that would change our lives. She said to me, “Have you heard of Childhood Apraxia of speech? I think he may have it.” Of course, I had not. She explained to me that it was a neurological disorder where the brain cannot send the triggers to the mouth to say words in the way that it should. After Kellen went to bed that night, I consulted my good friend Google to learn more about this thing called, Chilhood Apraxia of Speech... and I freaked out. I remember sitting there reading through these articles and my heart dropped. With tears brimming in my eyes, I read stories of a need for intense therapy, that children with apraxia often struggled throughout school, and the potential for lifelong challenges. I read through the characteristics. Some of the things did sound like Kellen, but some did not. It also said time and time again, that Childhood Apraxia of Speech was very difficult to diagnose before the age of three. Kellen was just two. Maybe this wasn’t it? But if it wasn’t…what was going on?
We went back to the therapy center to go over their assessment. It was of no surprise to us and yet it was still hard to hear and read. They classified him as severely delayed in his expressive language (what he produces) and placed him in the 1st percentile for his age. However, they also classified him as advanced in his receptive language (what he understands) and placed him in the 85th percentile for his age. They said because there was such a huge discrepancy between these two, they felt a strong need for him to begin speech services. They recommended 2-3 times a week however, because Dave and I were both working, their available time slots later in the day only allowed for once a week. We decided that we would start with once a week and move to twice a week once summer came (in hopes of also helping draw out our limit of only 30 visits a year).
It is now November. I’m not going to do a big run down of how speech goes each week but starting in June, Kellen did start going to CTC twice a week. He saw two different therapists this summer. At first I was unsure of how I felt about this. He took a long time to get comfortable and warm up to the setting and the first SLP. However, he adjusted well with the second SLP and it ended up providing us with two sets of eyes from two experts working with him to come to terms with what is going on. Now that school is upon us, we have dropped back to once a week mainly because of scheduling availability. We love the SLPs working with him and trust in what they are doing. We have continued to keep apraxia at the forefront, but because he is not yet 3, they are trying to ensure they rule out anything and everything before formally calling it apraxia. While it is absolutely not what we want, there is also some relief in at least having a “diagnosis.” The more I read about apraxia, the more blogs I read, videos I watch, and of course time spent with Kellen, the more it seems this what lies ahead for us.
And you know what? Truth be told… I’m devastated. Heartbroken. Defeated. What did I do wrong? What didn’t I do enough of when he was young? What did I do too much of? This disorder is heartbreaking. I can’t even explain it to you really. He on all accounts, is an average (okay in our world certainly above average J) two and half year old. He loves trucks, running and dancing, swims like a fish, cracks up at dad’s burps, giggles incessantly when he knows he should be napping and isn’t, thinks Daniel Tiger is the coolest, loves riding his scooter, hates vegetables, has great motor skills, grows impatient riding in carts, and loves his mama and daddy something fierce. Yet, his voice is trapped. To look into your child’s sweet eyes, to see that they want to say something but can’t… just breaks you. I will never forget one evening I said to him, “Kellen say ma” and he said, “ma.” Then I said, “Kellen say da” (he can) and he said, “bal” I said, “no Kellen, say da” again, he said, “bal”. I looked at him and I said, “yes you’re saying ball but say da. You know how to say it. Say da!” He scrunched his face in a way that told me he was working so hard to try and make that sound…”bal.” He looked totally defeated and I had tears in my eyes. I hugged him tight and told him he was perfect and did great. The next day, he said, “da” without issue. This is common with apraxia. He obviously knows how to say it. We know he knows. But his brain misfires and he can’t get it out the way he wants to.
Kellen is silent much of his day. Recently I read someone’s Facebook post about how their child was driving them crazy talking non-stop in the car. I thought to myself, what I wouldn’t give to have that problem. Someone else’s innocent post about how many words their not yet two year old is saying is like a slap in the face reminder of how far we are behind. Yet, I have to tell myself to be less sensitive about these things. People are not doing this to make people like me feel bad. They’re doing it because they are proud of their child… in the same way that Dave and I are proud of our incredible son. Kellen communicates most often through grunting, gesturing, pointing, and occasionally signing and crying/screaming. Luckily, we have learned to read most of these cues and can help him when he needs it. (ie. He will get a bottle of water out of the fridge and cup from his drawer, bring them to me and tap them together. I will then respond, “Oh. Would you like some water in your cup?” and he will nod yes). There is a fine line with this kind of stuff though too. We do not want him to learn to rely solely on gestures but we also do not want him to get frustrated by language because then he will not try. So me saying something like, “You can have some water when you say cup. Say cup. Nope, you can’t have any until you say cup. Okay then no water” doesn’t work for him. Instead I will say something like, “can you say cup? kkk…” and if he attempts any sound at all, I say, “yes! cup!” Positive, positive, positive. Through therapy we have learned that Kellen tends to bail on things if it seems like it might be tough (sort of the fight or flight … he’s much more flight). For example, let’s say he’s going down a slide. The therapist blocks the top of the slide because they want him to initiate communication on his need for them to move (gesture, pushing hands out of the way, making sounds). Often, he’ll just make a different choice rather than confront (I’m afraid this may be an overall personality trait he inherited from me). So we’re working on helping him feel invested. He does do some babbling and gibberish most often when he is in free play outside. He will make noise along with some songs (like he trying to sing along). He will respond to questions (“Where is grammy?”) with gibberish which we just nod and agree with. Again, we’re trying to validate his attempts right now. Any sounds, any attempts are victories. Big, huge, victories.
I’ve decided to start writing about our journey for two reasons. One, is just simply and selfishly, for me. I need this outlet. I am a writer by nature, and I’ve kept this experience pent up when I don’t need to. By keeping it in, I allow myself to get even more worked up and upset and also could personify in some ways an attitude of shame. This of course, is the farthest thing from the truth. I am absolutely nothing but full of 100% overflowing pride for my son. He is so strong. I know that he will persevere through this because I know his heart. He is seriously the most amazing, incredible human being and I have no doubt in my mind that his is going to achieve greatness. If you’ve met him, I think you’d agree. :)
The second reason I started writing is because I feel that this is something that a lot of people are unaware of. I for one had never heard of Childhood Apraxia of Speech and through online searching, it seems that right now there is a push to try and raise awareness. I have been trying to find a network and hope that blogging may help me connect with others going through a similar journey. I also hope that those who know me, and those who read this blog, learn alongside us about apraxia. Imagine meeting me in a park. If I said to you, “he’s blind” you’d understand. If I said to you, “he’s deaf”, you’d understand. If I said to you, “he has Childhood Apraxia of Speech,” if you’re like I was you’d look at me and say, “what’s that?” I hope to help change that.
Thank you for reading this epically long story. There is so much more I could write but I will save that for further posts. Thank you for joining us on this journey as we travel together through uncharted waters. Kellen, someday, years from now, I hope you look back on this and know how much you are loved and how much we believed in you during this difficult time. You are simply incredible and we are so blessed you are ours.<3
