When Words Don't Come Easily

Posted by Lisa Stevens on

My 5th born child, 2nd born son, is a hoot. He is very loving and has a zest for life...a lot of us in the house find it annoying how excited he gets over everything. If we are going to town and ask if anyone wants to come, he always does. If we are going for a walk, he wants to come. If we are doing anything at all, he is game. Now, it might just be that he is 8 (I honestly cannot remember what the other kids were like at that age) or it might be that he just really enjoys going and doing things. 

He started out a regular Stevens baby, doing his physical "milestones" earlier than most. He was walking at 8 months (which is not uncommon for our babies...they all walked at 8-9 month range), running shortly after, was able to climb well too. We have a video our oldest daughter took of him when he was 13 months old climbing up the stairs at the park and going down the slide, all by himself. He was so proud of himself and he did it well. Because of this, we never even dreamed there might be something wrong, his physical growth was so ahead of the normal range. 

Then he started saying a few words...not many...well, not many that we could decipher at first. As he was in his year one, there were not many words that he was actually saying correctly...but everyone told us not to worry, boys usually talk later. (All four of our other children were excellent talkers, all talking in full sentences shortly after their 1st birthday...but we know this is not always the case, so we did not worry too much). 

His second birthday came and went, during that year, I began to really stop and listen to what he was saying and how. We could, at this point, communicate with him, but rarely through his words, because he just did not have many. So we used sign language, a lot of pointing and demonstrating. You could tell he understood almost all of what we were saying to him, he just was not able to use his words to communicate back. 

I got more concerned when he was almost 3, he was still not stringing more than two words together and even with those words he did say....we only knew what he was trying to saying through context of the situation. If he was very random it took us a long time to figure out what he was saying, and sometimes we never did. When he was about 2 1/2 I talked with a friend who had been a speech pathologist before she became a full time mom, she said he had a list of "negatives" against him when it came to talking. 1) He was a boy...they tend to talk later and talk less. 2) He was the youngest...they tend to talk later and talk less. 3) He was the youngest of a large family....they tend to talk later and talk less. 4) His physical game was above par....kids like that tend to talk later and talk less. hahahaha So, you can see he had a lot of reasons why he may not be talking yet. She recommended if he did not start "picking" up on it by the time he was 3, we should seek professional help. 

We were very happy when about 2 weeks before his 3rd birthday, he did start stringing more than 2 words together. Woo hoo! We were on the road to true communication. But as his birthday came and went...and a few months went by, we realize that while he was forming "sentences" we still were not understanding the words that he was saying. (Like before we were usually able to figure them out based on context, but not always and still frustrating for everyone involved). But since we had never dealt with any speech issues before, we figured because he was a "late" starter he just needed time to develop. 

I was talking with another friend, who informed me that because we were planning on homeschooling, if we wanted the help from the government for speech therapy, we had to do it before school age. So, I thought at this point, I would pursue and see what happens. 

I made an appointment with a local organization that offered an assessment program. They did not do one on one speech therapy, but they would do an assessment and see where he was and what he would need. The lady was wonderful. She did the assessment and said that he should be further along by now. She wanted to help, and was able to meet with him a few times, giving us "homework" to do with him at home, while we were waiting for the referral at the hospital to go through. (Yes, he was that bad...she was not willing to let him go any longer without intervention...even though not technically her job). 

We then actually put a referral into the Moncton Hospital as well as through the St. Mary's Hospital. To see who we could get into first. We got the St. Mary's one first...and went for the assessment. She agreed that he needed speech therapy and the sooner the better. Shortly after that, we got the call from the city hospital and went to that assessment. (Poor kid had so many assessments...hahaha but to him it was all play, so he did not mind. He loved meeting new people and we were right there with him, so he was comfortable.) 

In the end, we got in with the best speech pathologist ever. (Now, I am sure everyone will say they love theirs....but I am serious. I won't give her name, but she knows who she is....she was the best. Adonjiah actually stills talks about her, wishing he could go see her again.) She, like everyone else, agreed that he needed help, and lots of it. She said it would be hard work, but she believed she could help him (actually that I could help him...since we only saw her once a week and I was doing the everyday work with him). 

After going to see her for a few months, he was improving, slowly...we were still working on some of the letters that the very first speech therapist had us working on. We are talking months and months of working on H, G, T, D....finally our therapist said we will move on and hope that he catches on to those ones too. This was a good idea, since the new few letters we worked on came quicker for him. Now, when I say quicker, I mean we had to work everyday and he only actually got them while we were working, during his everyday speech it was very hit or miss. 

At one of our appointments, we were talking while Adonjijah was playing, and she used two phrases to describe his difficulty with speech, one I honestly cannot remember, but it is a symptom of Apraxia of Speech. I had never before heard that, and I actually started to cry. (Which was a little embarrassing but she was wonderful and very comforting.) She explained that while he understands everything, there is something wrong in the connection from his brain to his mouth, and his mouth cannot figure out how to form the sounds needed to make the words. It made so much sense...but it sounded omenense to me....his brain was not working?!?! What? But she said, with lots of help/therapy and patience, we could help him.  

Of course I went home and researched and yes, I believed that is what is wrong. Cause that kid is smart as a whip, his memory is like an elephant and he understood any directions we gave him. He just was not able to form, with his mouth, the letter sounds. 

It has been a very long road from there....we continued going to the hospital until he was school age, and no longer eligible for the program. Then we moved onto the school system, which was an assessment with help sent home with me for him. He did not qualify for one on one speech, because we homeschooled. But both speech therapists agreed (the one from the Moncton Hospital, whom I kept in contact with, and the new school district supplied one) that him being homeschool was the best option for him. It meant he got one on one care/therapy every single day, and he was not in school where he may get frustrated with not being able to communicate properly with his teacher and his peers. 

He has come a long way, he is not perfect yet but most of what he says people can understand. He still has a few sounds that are extremely difficult for him. One of his newest sounds that he has conquered is the letter L. ( I think it is so cute when he says it...he still emphasizes it quite a bit, they tell me it will go away eventually, and he needs to do it that way until his brain/mouth just do it automatically. But for now, I am just pleased every single time I hear him enunciate because it helps me realize how far he has come.) During one of the many assessments he had done, they remarked that they had never had a child who was not able to sound out his vowels. This was something new for them, and while I am not sure I would use the "excited", they seemed please to be able to work with him and see how it would go. 

I also remember at one meeting, one of the therapists commented that he had adapted well to not being able to articulate properly. And when I actually thought about it, it was true. She said he had made up his own language...one we understood because we were with him all the time. Which I guess reminded me that while there was a connection not there (from brain to mouth muscles) his brain itself worked just fine, in fact, better than fine since he found a way to communicate with us even when his body did not want to cooperate. 

Will this disability be a life long disadvantage for him? We do not know. But we do know, that while it has been hard on all of us, we would not trade the journey we have taken with him for anything. He has taught me, as his at home teacher/therapist, the true meaning of the word patience....because while I consider myself a patient person, dealing with Apraxia of Speech has brought my patience game to a whole new level. 



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