Thursday, October 3, 2013

"Your Daughter Isn't Speaking Back To Me..."

For those who know my daughter Paige, and for those who have had experience with someone who has Apraxia, you'll know that Paige doesn't talk much to people she doesn't know.  Once she knows you, she'll "talk" your ear off, but until then, she's pretty quiet.  She knows that I'm her "voice" and that people don't understand her as much as she would like, so I'm sure that's why she's quiet around new people.

Strangers, or acquaintances that don't know that Paige has Apraxia often try to talk to her.  The older she gets, the more it happens.  Don't get me wrong, I'm glad that people want to talk to us.  In fact, I like talking to strangers (weird?... yeah, I just realized that's weird...).  No matter what the situation is though, when people find out that my daughter has a neurological speech disorder, I get a lot of responses.
  • Some people shrug it off.
  • Some people acknowledge it, but don't get the seriousness of Apraxia.  They often think it's just a speech impediment.
  • Most people don't know what to say. (I get it, I promise, I do!)
  • Rarely people ask to know more.

This is the scenario that most often plays out...

We are at Target (my favorite store in the whole wide world) & a lady (usually on the older side) will stop to talk to my 2 young girls in the cart (because they are so cute... why else?!) :)  To simplify things, I'll call the "lady on the older side" Ethel.

Ethel: Your daughters are so cute!  
Me: Oh, thanks!  I think so, but I'm supposed to think so, right?  (said with a smile)
Ethel: What's your name, dear? (said to Paige)
Paige: Puh-ahge (said very quietly).
Ethel: (looks back at me with a puzzled look)
Me: This is Paige.
Usually Ethel then proceeds to ask Paige more questions, finding it more and more absurd that a three year old is not talking like she had expected her to.

Once this gets to a certain point where Ethel is perplexed, I then go on to explain that Paige has a neurological speech disorder.  



Although I understand that everyone is different & has different experiences leading up to that point, I find it interesting to see people's responses to our situation.

I do appreciate though, people asking to know more about Apraxia, instead of just awkwardly shrugging it off & not talking to us anymore.  Paige & I can both communicate with people, Paige just does it a little bit differently than other people.  Occasionally she'll sign, and sometimes she will try to talk.  Sometimes she talks quietly and sometimes it takes her a minute to connect her brain with her mouth, but she likes to respond to people's questions (she loves attention!).  If people can't understand her, I am happy to translate for you so Paige can be included in the conversation.

This post isn't meant to be a post to complain about how people react to my daughter's Apraxia, honestly, I completely understand that some of the reactions are not what I'd like them to be.  Before Paige had been diagnosed with Apraxia, I probably would have been the one to acknowledge it, but not know what to say about it.  I felt like the mom who wrote this letter.  Since then, I've become more understanding & comfortable with accepting people's differences & including them anyway.

And let's be honest... I'm still learning, too!  

I'm still trying to figure out the best way to explain Apraxia to people.  It's complicated!

We had a visitor come to our home a few weeks ago and Paige came down the stairs to see who it was.  Our visitor greeted Paige & asked me if Paige talked.  I was surprised that she asked me this, but maybe I shouldn't be too surprised because this lady was a bit older, too.  I responded and said, "a little bit" while stroking Paige's hair as she stood next to me in my protection.

I've thought a lot about this moment since it happened.  I have no idea the "right" way to tell people.


On some Apraxia Facebook groups, they have talked about this a few times.  Some people say that it's none of anyone's business that their child has Apraxia.  Other's have mastered a simple explanation of what Apraxia is.

I on the other hand, have not decided where I fit on this spectrum of special needs parenting.  I want to protect my daughter.  I want to focus on the positives and what she can do, instead of what she can't do.  But, at the same time, I don't want to make things awkward for anyone involved in that conversation.  I want to have respect for my daughter, for the person I am talking to, and anyone else involved.

Maybe you can help me... 

How have you decided to respond to people regarding your child's special needs?

I've linked up with #itsallspecial!


It's All Special
 
 
*This post may contain affiliate links.  What that means is that I will get a small percentage of what you purchase through the link.  This will in no way charge you more money... in fact, I love to save money so I usually post links that are the best deals possible.  I am only an affiliate for companies I personally use and recommend, so I know you will be in good hands.  All money earned through my affiliate links or donations will go to my daughter's speech therapy.  

15 comments:

  1. Hi Michelle! Thanks for hosting and sharing this story. I know you are right at that age when people start "expecting" your child to converse. I did not have a talking three year old until child #3, so I forgot that toddlers should speak!

    ReplyDelete
    Replies
    1. Yeah, it's crazy! Sometimes I forget what is typical of other kids her age. But maybe that's a good thing! :)

      Delete
  2. My sonKyle, is 7 years old and is nonverbal (as well as having epilepsy, global developmental delays, and hypotonia). From a quick glance, he appears to be like any other 7-year old but if anyone is around us for just a minute or two, it is apparent that he has special needs. I guess my situation makes it easier for someone to ask questions since him being nonverbal is not the only special need he has.

    You are right in saying that every parent is different when responding to people about their own child with special needs. I always try to be very open and for some reason, I hope that people ask questions. I would rather be given the opportunity to talk about his special needs and maybe educate someone a little rather than not being asked at all. Sometimes I try to make a little comment about Kyle's special needs, which helps the other person know that it's okay to ask questions and that I'm willing to talk!

    ReplyDelete
    Replies
    1. I totally agree... I would love to help people to understand, so I hope they feel comfortable enough to say, "tell me more", or anything for that matter! But, if they don't I can understand where they are coming from.
      I think I have unintentionally made little comments here and there, too, now that you mention it! I like that idea and will focus more on doing that. Thank you!

      Delete
  3. That would be hard --- trying to find that balance of explanation, but of not wanting your daughter to keep hearing about her speech limitations, that she is already very aware of. I would try to explain it in some fun way that is a quick explanation and have something I'd say at the end to make sure my little one knew I thought she was awesome and capable of many things. Do I know what that is? No. Sorry. I actually have been looking up apraxia since you told me about it, I had never heard of it, and am wondering if my 2 y,o. has that or something like that. I need to take her in to find out what's going on with her speech.

    I don't typically get in many conversations with people outside my home -- maybe I give off a bad vibe. Or they see 4 crazy kids and crazy mom and run for the hills! It seems to me I might not explain to everyone, because sometimes those people may not even be fully interested. Maybe just limit your explanations to those that seem sincere or invested in the conversation to limit the amount of times you explain it??

    You're a fabulous mother to Paige, I know you'll figure something out to say so people can understand what's going on better. I wish I was experienced or helpful.

    ReplyDelete
    Replies
    1. I like your suggestions, especially letting her know how proud I am of her at the end... thank you!!

      As far as your daughter goes, I wish you luck! I think that people often overlook taking their child into the doctor (or speech therapist) to check things out. If you haven't already found this article on my site, it might be helpful for you as to what options are available. http://www.trustmeimamom.com/2013/09/so-your-kid-has-speech-problem-now-what.html
      I would assume either her pediatrician or Early Intervention program would be the best place to start. We loved our EI therapists! Good luck & I'd love to hear an update on her if you get a chance!

      Delete
  4. My son is 2 1/2 with apraxia. When we first started speech at 2 there wasn't a huge noticeable difference between his speech and his playmates. The older he gets, the bigger the difference is and is more noticeable. I too am having a hard time with my personal definition of what apraxia is. I have heard other moms get little business card printed with an explanation along with a website where the person can learn more. I think these will definitely be handy when he starts school and other parents start asking questions.

    ReplyDelete
    Replies
    1. I've heard about that, and started looking into it at one point, but I got distracted and forgot about it... thanks so much for reminding me! Best of luck with your son! I hope everything goes smoothly for him!

      Delete
  5. It sounds like you are doing a really wonderful job. Maybe you could tell them that she loves to interact but for now, she needs to talk through you. Sometimes people equate a physical limitation like apraxia to development, but it's not necessarily the same thing. And of course some people want to be private and others make it their mission to raise awareness. My son has ADHD and that is a HUGELY misunderstood condition. I am happy to tell anyone and everyone who will listen what I know about it and our experience. I also do not want him to think there is any shame in it and that we shouldn't talk about it. But every family, every condition is different. It sounds like you are taking a natural path with it depending on where you are, who is there, etc.

    ReplyDelete
    Replies
    1. I love the suggestion you had ... "Maybe you could tell them that she loves to interact but for now, she needs to talk through you." Thank you so much!
      I've often wondered about ADHD myself... If you're interested in telling me a little bit about it I'd love to hear!

      Delete
    2. I think sometimes people just don't understand and maybe that simple explanation would help, at least I hope so :) About ADHD, there is a lot of judgment I've found, whether it is assuming the behaviors are due to bad parenting or a willful child, to assuming you choose medication because it is the easy route to casting the kid off as a lost cause or labeling him a problem.

      ADHD has a real biological physical basis, I believe that. There are studies that suggest it is related to the neurotransmitter dopamine, which controls the reward center of the brain. That is why medications do work (which I have seen first hand and it is a hard hard decision, not made easily). It also has connections to allergies and asthma (my son has both of those too). I pay attention to kids who have this disorder and their actions are not from willful disobedience or bad parenting (in most cases), they are just different. They think differently. They respond differently. Often traditional discipline or teaching methods don't work with them. That is the hardest thing to get people to understand, they simply do not respond the same way as others. They need something else, something extra, something that fits them. Not because it is an excuse, but because that's what they NEED to be successful.

      They are often very smart and later in life very successful but they have a lot of challenges to overcome. And for them to be successful they have to have parents who are willing to talk to the school, ask for things, maybe demand things and stay very very involved. If you ask any parent of a child with ADHD they would tell you, I think, the teacher in a particular year makes all the difference, whether they are patient and understanding, educated in different techniques and willing to work with you. A teacher can make or break a kid with ADHD.

      I wouldn't change my kiddo for anything, but dang I get tired some days :) Sorry this got really long, LOL!

      Delete
    3. Thank you so much! I've always been interested in knowing more, but never knew who to ask. I can relate slightly to "working" with the school (sometimes demanding things) with my daughter's speech needs & now we're wondering if she has sensory processing disorder, so we're scheduling another IEP meeting... with me luck!
      But thank you so much, I love learning about different challenges that kids are going through & how even though they are all so different, they are all so amazing & I love learning from them! Your sweetheart sounds great & I'm so glad you shared with me... Thank you!

      Delete
    4. You're welcome. It's just that the behaviors are ones that people have a hard time being patient with: impulsiveness, fidgeting, awkward interactions with peers, much bigger emotional responses etc. I'm in a FB group for the blog A Mom's View of ADHD and every day I see story after story from around the U.S. of struggles with schools, relatives, doctors, medicines, etc. It can be hard to sort out.

      I wish you great luck with the IEP! I hope you can find something that helps. Our school district is small and so far I can work very closely with the teachers. You have such a sweet view of kids, that's how I feel too. Each one is beautiful in different ways.

      Delete
  6. Michelle,
    You and your family are so sweet! Thank you for sharing your story and helping us all understand how to respond in a better way. I look forward to this #itsallspecial journey with you.

    ReplyDelete
    Replies
    1. Aw, thanks! I am excited to sharing it with you, too! Thanks for stopping by!

      Delete

I actually really love it when you comment! ;)

Related Posts Plugin for WordPress, Blogger...