Monday, January 4, 2010

Because, it's not 'just a delay'

With the exception of a couple posts, I really gloss over Collin's apraxia. It's not on purpose though. I’ve been thinking about it, for many, many reasons. It started a couple days ago when our lunchtime music ended and Collin was trying so hard to tell me that - I assume at least. I really don't know what he was saying, but he was trying so very intently. He said "heee, haaa, uhhhh, heeee, aaaa..." and waved his hands in the direction of the music source (when he is trying to tell you something, it’s usually with his whole body like this). I said, "are you telling me the music stopped?" and he said: "no! haaaa, uhhhh, aaa, haaa, ahhhh..." I asked several questions and he continued to try intently with much passion to tell me what it was he was trying to tell me, but I never really figured out what he was saying. This is a common frequent daily occurrence. Very, very common. He is trying very hard to express himself, but he doesn't know how to form the words. He does, however, clearly know what he wants to say in his head, as he is a very smart little boy. How frustrating that must be.

When I get him out of the highchair after dinner, we have a little thing we do. Basically I say: "Ready," wait for him to repeat that, then I count 1, 2, 3 and say go, waiting after each for him to repeat. After 'go!', I bring him to the floor quickly. He loves it, very motivating (to talk) and fun for him. Every night for weeks we have done this. He has the 'ready' down pretty well (at least you know what it is since it follows me saying it, but it doesn’t sound like ‘ready’) and he is pretty good with saying 'one' (sounds like 'wooon'), but the 'two' and 'three' he cannot do. He watches my mouth intently, I break it into sounds, and finally just try to get a single 't' sound from him, but the T's are just so hard for him. He studies me, but doesn't even try the word. He will try the 't' sound, but it's far from 't.' His brain and mouth just aren't working together. He does say 'go' now, but it's more of an 'hoe' sound.

I was reading a fellow multiple mom's blog the other day and I thought of this and Collin again. Her twin sons have SPD and they struggle with many things due to it. Most people just write off their behaviors or episodes as something else - tired toddler, bratty child, a crier, spoiled, whatever. But that is not what it is, that is not why they struggle at times and it's just unfair to label them incorrectly. Just like this is not 'just a delay' for Collin. He won't just one day realize he can talk and start talking with great articulation (in fact the next issue once words finally start flowing better is sequencing of words) and all will be well in his world. This isn't a delay, it's a disorder. It is a neurological motor planning disorder. I don't say this for you to feel bad for him or for it to sound like I think it's the end of the world and that he will never talk. That is definitely not it at all and I do not remotely believe it is the end of the world, as I know all too well of other horrible diseases in children that ARE in fact the end of the world. However, I still have my pockets of feeling sad, frustrated, worried, a little scared, and many other things regarding Collin's apraxia at times. I am his mom. Don't get me wrong, I am not consumed by it nor do I focus on it constantly. I believe everything will eventually be okay, of course. But I am realistic and know it won’t be any time soon. Regardless, I am allowed to feel all those things… I am.

Sometimes, like the other twin mom blogger, it frustrates me when people gloss over Collin's disorder. Not that I want to focus on it or define him by it. That's definitely not it at all. It's more that when he has an accomplishment, I want to stand and cheer (and have others who are present do the same – it’s quite the motivator to him) - this is hard work for him - new spontaneous words ARE huge accomplishments. And when he has a hard time expressing or is having many frustrations verbally, I want to share as well. I can never tell if people say certain things to me because they are trying to make me feel better or if they don't believe that he has a disorder (but instead just a delay) or what. I really don't know. I guess it all comes down to the fact that until you have the experience yourself, it’s hard to know what it’s like. It’s hard to understand what it is and the true struggle or implication. It’s hard to know what to say.

Because I share this blog with my fellow multiple moms, I have decided to talk more about Collin’s apraxia. One, to chronicle his journey for him (and me). Two, to share the ups and downs (because sometimes I need to do this). Three, because there might be another mom who reads this who has a child they suspect has this disorder or know has this disorder and if so, there is comfort in knowledge, other’s experiences and finding a ‘friend’ in the same boat.

Just two weeks ago when I picked Ethan up from school on the first day of my vacation, I found out that there is an Apraxic child in his room. I have her mom’s information and got to talk to her briefly before the twins melted down. I felt comforted by this and am excited to find out more about their journey. She indicated her daughter was in speech therapy three four hour days a week, at Ethan’s pre-school two four hour days and then in special needs pre-school the other three days and that she had a lot to share with me. She also gave me that knowing hug and said “I understand how you feel” the moment she found out we shared this common disorder among our children, without me even saying a word regarding anything. She just knew based on her own journey and how she felt in the beginning.

The new year has me, as always, thinking about many things and making lofty goals. So, with that in mind and the desire to document this journey more, as well as share more with other moms and my own family and friends, you’ll probably see more posts on apraxia. And maybe some other things too.

Thank you for reading my posts (especially if you made it all the way through this one), thank you for your support and your comments/emails and thank you for jumping on the ride with us!

2 comments:

Anonymous said...

It is very true, until you are in the same boat as someone you have no idea what they are feeling or going through. What I do know as an outsider is Collin has a great family that is going to give him every opportunity he deserves. Everyone, including him, will have frustrating times, but there will be someone else in the group that will help forge through. That is the beautiful thing about families. If there is ever anything I can do, let me know.
Michele

Jenn Murray said...

Wendy: I just found your blog. Thanks for all the info today. Apraxia has been brought up with Keegan, but he's still too young for a diagnosis. I don't know anyone that is a YEAR behind in speech and get annoyed when the older generation tells me not to worry. I feel so helpless at times!! Best of Luck to you.

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