Childhood Apraxia/Speech Delay Links

I am continually surprised at how many people are searching for information on childhood speech delay. I'm not sure why I'm surprised, as I've been there myself.

Maybe it's because of the fact that every day I have many hits on my childhood apraxia posts (that's all 2 of them:). And from all over the world as well. That may not seem like much to other people, but I happen to know I am a small minnow in the huge internet pond, and I would think I'd be the last place a search would land you. Apparently, not so.

So I wanted to share a few new links I have found that might be helpful to others.

The Speech Therapy Web I am really excited about finding this site. I am hoping to get some new ideas to use with my own daughter, and I encourage anyone looking for ways to work with their children one-on-one at home to visit this site. While I can share with others my experiences with my own daughter who has childhood apraxia, that definitely can't compare with someone who has been trained to work with speech-delayed children. She has a Q&A section that could especially be helpful for those who would like some advice concerning their child's particular issues.

My Blizzle This is the blog of a homeschooling mom who has a 7 year old daughter who has speech issues. Although she hasn't written a post in over a year, I found several of her old posts encouraging on several levels: 1) she had alot of the same worries as I do about her daughter "fitting in" with other kids, and 2) I was encouraged to hear the advancements her daughter has made since she started therapy. She includes some YouTube clips of her daughter that I enjoyed watching. I wish the best for her and her little girl.

Apraxia Kids This is the site that put an end to my searching, and pointed me in the right direction for getting help for my daughter's speech issues. They have a wealth of information on their site, and also have a monthly newletter you can sign up for.

I don't often post on this subject, as I know it doesn't apply to most who visit my blog. But I do like to occasionally touch on the subject and share things that have helped us in this area.

Have a wonderful day~

Apraxia Update

I have to admit, I really had planned to post about homeschool today. We've been doing some really fun things this week, and I also had some free (such a nice word) site links I wanted to share. But that will have to wait til Friday.

I've noticed (according to my site traffic reader) that I am getting some hits on my Childhood Apraxia post that I posted in January. Which made me curious. So I checked Google (I'm like their biggest fan) and typed in to find blogs about Apraxia; only to find that I'm near the top of the list...due to my 1 post on the subject? Think about that for a minute.

And while you do, maybe I should give those of you who have no idea what I'm talking about, but might want to know, a link to that post here. Sometimes I forget I need to do things like that:)

In some ways, we've made so much advancement with my daughter in this area, that it has somewhat gone from the forefront of my mind to the back burner. In some ways.

Then there are times I start worrying about next year when she will be in 1st grade and it will really be noticeable to the other kids that she has this speech defect, however improved from the beginning it may be. And when I see her sing with a group of kids and know that she can sing the song at home, only slower, so her brain can wrap around the words and connect the sounds. But in a group, especially when singing fast songs, she just can't begin to process it.

But then I think of all the many ways she (and we) are blessed. I'm able to stay home with her and work with her using techniques we've learned. We have an absolutely wonderful and highly qualified speech therapist (whom she adores). And we have a great support system.

We've been attending the same church since about 5 years before my daughter was born. It is pretty much our whole social life, other than extended family. There is always something going on there. Which also means my daughter has been around many of the same children there since before we even knew she had a problem.

Which reminds me: that's actually where we started to realize there was a problem. I would drop her off at 2-3 year old class each week. We had noticed she wasn't talking much, but I've never been a great worrier of whether my kids were exactly on target for each little growing thing. And some older women had even suggested to me that she didn't talk because "her brother's do all the talking for her", not meaning it in a bad way at all, just that it's sometimes that way for younger kids in a growing family.

But then I started to notice that when I would go to pick her up, which was usually an open play time, she would be off playing by herself. Not exactly in a wallflower way, just a disconnected way. The teacher said that was normally what she did during that time.

So we eventually had her tested (including a hearing test) and much of that is in my prior post.

I am starting to notice a little exasperation in other children when she's trying to talk to them and it doesn't make any sense to them. Our little neighbor girl often looks at her and says "I have no idea what you're saying!. She prefers to play with my middle son now (she's the same age as my daughter). It bothers me a little (I'm only human, and a mommy at that) although I know she really doesn't mean any harm.

But then there is her little friend at church (actually a year older than she is) who can play with her for hours, and I never need to step in and translate. She works around the issue, and they just seem to be able to connect. She's like a little angel in disguise. I probably don't need to say that this little girl has a special place in my heart, as well as my daughter's.

And the adults at church really go out of their way to try to encourage me; there isn't a week that goes by, where someone doesn't stop me to tell me exactly what she said to them, and how well she said it, LoL. I'm chuckling about that because they almost overdue it... but it brings tears to my eyes that they care that much. She runs from person to person there, chattering away to them. She feels secure and cared about there.

Which brings me to this: having a support system makes a big difference. Before we had some of these things in place (especially the speech therapist) I felt that I was drifting hopelessly in this area, that I was literally helping to set my child back in life.

I am sometimes concerned that some people might think that I shouldn't make such a big deal of the speech thing. That atleast my child is healthy (which she is) and has no other issues to deal with.

And then there is the fact (which I've learned by experience) that most people don't understand that there is a difference between delayed speech and childhood aphraxia. And they have to be dealt with in different ways. We wasted 6 months in a speech class because we didn't know this. And the delayed speech specialist who taught the class didn't catch on until we brought it up to him.

Would you believe that I owe it to Google that I finally hit upon my daughter's problem? I finally in desperation went to my computer and, with tears of frustration I admit, determined to find out why my prescious little girl couldn't clearly express the words that she wanted so desperately for me to understand.

And now I will correct myself: I clearly owe it to God. For leading me to the information I needed to move forward; for giving my husband a new job (at the time) with insurance that pays a big lump of a fairly exspensive speech therapy bill ($113. per visit) ; and giving us a speech therapist who, after teaching at a renowned medical college all day, really doesn't need to leave open a Thurday evening slot to work with our little girl. And for the people who are cheering her on.

I want to leave a link here to the site that opened my eyes to my daughters speech condition, it's called Apraxia kids. Their motto is Every child deserves a voice.

And don't panic if you're new to the knowledge of your child having this communication disorder (to be technical). Knowledge is power, though it may discourage you at first. But don't let it keep you down. Be your child's best advocate. There are avenues available, it's just sometimes hard to find them.

And if you need someone to talk to about this subject, or someone to point you in a helpful direction, I volunteer. Feel free to use the comment section of my blog.

I'm not a specialist on this subject. I'm just a mommy who wants her little girl to be able to reach her potential in this area. To whatever level that may be, I can be content with it, as long as I know I've done my best to help her on the way. That makes me pretty special to her.

Childhood Apraxia

The baby of our family is five years old and referred to as the "princess." I personally consider her a miracle, as I (as well as my Doctor) really didn't know if she would make it through my difficult pregnancy. But after six months of my being on feeding tubes, multiple pic-line IV's, 4 blood infections, and countless hospital stays, she came into the world. We were thrilled.

When she was about three-years-old it became pretty clear that she had some kind of a speech delay. It wasn't that she didn't talk- she did. But it was complete gibberesh. The one word that could be recognized was "Mama". (That's my girl!) So we started the tests.

Her hearing was fine. She was speech delayed, and we needed to put her in a special class. It just so happened the little gradeschool down the road had a once-a-week class, and so we promptly started taking her there.

But after six months I questioned the Teacher: "She doesn't seem to be making any progress. I mean, she actually interacts more than most of the other kids in the class, but her speech is still the same. " To which he replied "Oh, you noticed that too?" That wasn't exactly what I wanted to hear.

My daughter is a beautiful, energetic, bubbly little girl. And I'm completely unbiased in my opinion of that- just like any other parent:) I am so thankful that she is healthy, and that she has no severe disabilities or issues due to my pregnancy. I was on several medications while pregnant with her, including one used for cancer patients to control nausea. It really came down to the lesser of two evils.

But what mom doesn't want their child to go smoothly through life without hitting any bumps in the road? And this could turn into a big bump.

So I started researching the issue of speech delay online. And that's how I found Childhood Apraxia.

Childhood Apraxia is a motor speech disorder. A child with apraxia has trouble (to varying degrees ) programming and planning speech movements. The words we speak have a definite sequence of sound and syllable that must be ordered together. For most of us when we talk, it all flows together without a thought. But children with apraxia cannot access these speech motor plans/programs.

Well, I finally had my answer. My daughter wasn't getting better because she wasn't the typical speech delayed child. I had mixed feelings about this. I felt like I had something to work with now, instead of just worrying about her lack of progress. But with this new diagnosis came the knowledge that we were looking at possibly years of one-on-one speech therapy.

So we started the search for a speech therapist. About this time, hubby started a new job. It wasn't great pay, but it did have excellent insurance. And it just so happened that there was a man who took appointments two nights a week at our little local hospital. He is a teacher at OHSU, and works with failure-to-thrive and severe speech delayed children. He came very highly recommended. God definitely had a hand in this!

So, at almost 5 years of age, my daughter was finally getting the help she needed. When she started, about 7 months ago, she could say about 5 words that people in general could understand. She could not say even a complete phrase, let alone a sentence.

Now she can say so many things, including "I love You". It thrilled my heart the first time she said that! We still have a long way to go, but it feels so good to be making progress.

To people that don't normally interact with her, it's still extremely difficult to understand alot of what she says. But family and friends see the improvement. I try to ignore the occasional person who says "I can't understand anything she's saying. Why can't she talk normal?" Some just pat her on the head and say "that's nice honey" to whatever she says. I know they don't mean to be offensive.

She is learning sign-language to help with communication with others, and we work at home on various techniques. Her Speech Therapist is very pleased with her progress.

It is because of this that I now find myself homeschooling her for her first year of school. My pediatrician said the public schools aren't equipped to deal with this type of speech delay, and I know she would not get the help she needs at our (or any) Christian school. So, for atleast the next 2 or 3 years, I will be her teacher.

I really don't mind this, as I love getting to spend the extra time with her; and I won't have to worry about her getting lost in the shuffle, so to speak. I'm also homeschooling her 2 older brothers, and we co-op with another homeschooler 2 days a week.

So that is our journey with Childhood Apraxia so far.