Speech is such an ugly word in this house. It has been mentioned many times how badly we want to communicate with our child. It has been a source of contention many times between me and others. Its hard to explain what happens.Tyler signs many words and usually we (meaning me and his dad) can understand what he wants. We got him to finally sign dad after he USE to say it. He now will only sign it. We have a handful of other signs/gestures that we know mean certain things. Once we explain them to others they can understand him.
When we started school we thought that being around other kids would help with his speech problem. That it would encourage him to be more vocal. While we heard more sounds and a little bit of animal sounds no words came out of his mouth.
We increased his speech and did private and are still doing private therapy. I take him once a week for an hour. Because of his need for being around mom we have transitioned him to being with just his speech teacher.
In February when we got his shunt replaced I called to talk to his teachers and therapists at school wondering why no one noticed he acted off there. For the first time in six months we found out that he was not making any sounds or making any progress with his speech teacher at school.
This was when the speech teacher mentioned he was snotty and wouldn't participate. I kinda of laughed and said " He is three. What do you expect." But I got mad. I sent a notebook every day and rarely got back any kind of feedback. I assumed he was doing fine. Communication came only when I asked questions. So this information was new to me.
I immediately sat down and went through books, puzzles, toys, anything that generated some sort of response from Tyler. I wrote out a long letter explaining noises, sounds, gestures and anything that he did when looking at certain objects.
The first day after that I got a response from his teacher. She said "Wow, we had no idea he would be this verbal." I thought for six months you got nothing and it didn't dawn on you to come and talk to me or call. I would have come in and helped you.
I was furious. But that hasn't really increased our speaking. When we got a failed hearing test everyone ( meaning teachers and therapist at school) thought this was the answer to his speech problem. Me and his dad rolled our eyes thinking that this kid can hear just fine. And sure enough we were right. Nothing was wrong with his hearing. He had his ABR done and not one bit of hearing loss at all.
This is were I started hearing from people " oh that is how my kid was/is" or " have you tried this" or my favorite " I am sure he says more than you think." Um nope. He really doesn't. In fact he makes more noises and sounds for me than he does for any one else. Not kidding. None of those things are comforting when you are dealing with a almost 4 year old. At some point communication is crucial. Speaking is needed to get your point across and to eliminate some kind of frustration.
We have been working on getting the beginning syllables out of his mouth. His private speech lady is trying so hard to get ba ba and da da out. All day long we have done something with speech. Him touching our mouths. Him feeling our throats. Me repeating and repeating ba ba ba.
After his bath tonight a most glorious sound. Ba ba
Cheers and clapping and excitement came. He did it again and again. Looking for praise. Clapping and cheering continued.
This speech thing is exhausting. It is a lonely world. Not just for me. But I can't imagine the loneliness he is feeling not being able to express himself and have us understand.
Speech
Communication
One word
3 comments:
Hi. I just linked to your blog from a post on CPMoms. Emma has a cochlear implant due to deafness, but there are other kids in the program that seem similar to what you describe. They have a condition labelled Auditory Neuropathy Dis-synchrony. That is, the kids can hear but the brain hears a lot of static making it hard for them to repeat words/sounds they hear. I have been told it's like listening to a radio station (pre-digital) when you were in-between the stations - you could hear it, but it was a bit staticy and it was harder to understand. I'm not an expert on this, but the one girl in the program sounds very similar to your son. Perhaps an expert in your area might consider this for your son? They usually pass the ABR without a problem since there isn't an issue with the hair cells in the ear. Just a thought as I know so many of the other parents struggled with this since there isn't a ton of information available on AN.
Kristina
Nancy,
I completely understand where you are coming from. I knwo my Josh is only 2 (next week), but he is not making any progress in the verbal area. I babbles a tiny bit, but very basic babbling... ba, da is about it. He doesn't make any noises in play or any animal sounds or anything. Our oldest son with Autsim was slow to develop speech, but even he could do animal sounds and some car noises when he was 2. It is very hard to not be able to communicate at all. I truly know how hard that is. Josh has been diagnosed with Apraxia of speech...but I don't know alot about it yet. GOod luck!!!
I was just saying to Sarah (Sydney's mom) about how I thought I must be over reacting about Dakota's lack of speech and pointed out how it never seemed to bother you that Ty didn't talk. It's nice to see that I'm not crazy for being disappointed that my over 3yr old isn't talking.
I can totally relate to your frustration about people who are quick to jump in and say they had a similar experience. There are no guarantees with our kiddos. Speech is often taken for granted I think. I know even with my 29wkr who was "delayed" (didn't talk until after 2yrs old which I thought was a huge deal...) I just assumed with time it would come and never worried he might never talk. Dakota's a totally different story and it is hard. I would give anything to hear her be able to talk to me. To answer a question. To babble to her friends the way they talk to each other.
One of her little friends (younger than her and a 24wkr with grade IV IVH) came up to me the other day and said "I think you should put sandals on Dakota." I probably scared her with my jaw dropping to the floor at her clear and understandable speech. I want my kid to be able to tell me what she wants. I don't want to play the guessing game based on pointing and her use of her one clear word, "no".
I have now turned your blog into my venting station and I apologize. Just know you're not alone. I often times wonder what good speech therapy is when we're not making hardly any progress. Communication even non-verbal is great (as I'm CONSTANTLY told) but speech, my daughter's voice, that's what I'd really like to hear.
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