Looking for Other Moms of Children with Childhood Apraxia of Speech

Well hi there,
Wouldn't you know the one time I stop reading Mamasource posts, yours pops up! Never did I expect to see such a thing!!
My 5 year old stepson has Childhood Apraxia of Speech! He didn't talk at all until he was almost 4 years old, and is now talking in mostly sentences, and though he's not "conversational" yet, he's made such tremendous strides this past two years that we are just in awe of him!
Have you found the website yet? www.apraxia-kids.org. There's a listserv you can sign up for that links you to people all over the country that have experience with apraxia. Many of the parents' kids are autistic, some have other disorders, it's rare for apraxia to be the main diagnosis but thus far it is for my stepson. He also has sensory processing disorder, does your son have sensory issues as well?
We got the "signing times" dvd's, but he didn't sign. He signed "more" "please" and "I'm sorry," but he mostly didn't have an interest in signing. He was extremely frustrated all of the time, and we had tons of behavior problems from it. We are supposed to see a behavioral therapist this month to try to help the issues that started way back then, but he has come so far it's just remarkable.

We can't try any elimination diets because of his sensory issues, he will only eat about 4 foods. Ironic, because the research I've done points to food sensitivities as the main cause of sensory issues. Hmmm....but we did try a couple of supplements. He started taking Omega 3 when he was....late 2 or early 3. I found this supplement via the listserv that's on www.leesilsby.com or org, can't remember which. The supplement is targeted to Autistic kids, it's called ASD vitamin powder, but my stepson's not autistic, just apraxic with spd. We started giving him the supplement and three weeks later he started talking. Was it the supplement or was it just his time? Who knows, but we used it for a while.

Just remembered this wasn't a "private email" so maybe I should end here! If you'd like to hear more or email or something, send me a message and we can talk!

Good luck, you're not alone!!

Hi M.. I'm a speech-language pathologist and I have worked in early intervention for some time now. I have worked with several kids under 3 years old with what I would diagnose as childhood apraxia of speech (CAS), although it is very difficult to diagnose a child this young because they do not have enough language skills yet to be able to hear enough speech to diagnose it (kind of a difficult situation to be in!). But, I have seen great success with some of my clients by using baby sign language to help them meet their basic wants and needs (to be able to say "eat, drink, sleep, help, up, down, open, close, play, book, ball", etc). This really helps children understand that communication works and builds a positive reaction to language... since speaking is so hard for children with CAS, figuring out how to communicate, even if it isn't with words yet, will help them learn to enjoy communicating while speaking is so frustrating to them. Also, using picture communication helps tremendously if your child is having a hard time communicating basic ideas to you. You can take pictures of your son's favorite things and common items around the house and use them as a way for him to show you what he wants by pointing to the pictures. You can put these pictures in a book, leave them as loose cards, put velcro on the backs of them, or put magnets on the backs of them and put them on the fridge, but always make sure that he can reach them in order to point or give the pictures to you. If he does point to a picture, make sure to give him what he asked for right away and give him lots of praise for communicating with you. The same goes for if he uses signs to tell you what he wants. Signs and pictures do not prevent children from learning to speak... they actually help children speak sooner because they build basic language skills and build their vocabulary. Children with CAS might be able to say something spontaneously but have a very difficult time saying the same thing if asked to imitate it when someone else says it first. Therefore, direct speech therapy can be very frustrating for them at this age because they will be asked to work on improving their imitation skills. You can play games making silly faces in the mirror or making silly sounds to get him to try to imitate you, or if he is able to say and imitate words, say funny words that he can try to imitate you. Keep it happy and rewarding, and do not expect perfection! At your son's age, it is most important to work on the basic idea of understanding communication, whether it be verbally or through signs or pictures if verbal language is too difficult yet. Always keep it positive and give lots of rewards and praise for ANY attempts that he makes to communicate in any fashion! I hope this helps and gives you some good ideas to use at home. Good luck!

I have a different kind of response. I didn't speak clearly until I was four or five. It was tough in preschool because I couldn't communicate with the other kids and as a result was shy. I remember being frustrated when the adults would ask me questions and then make up the wrong answers and try to get me to nod in affirmation.

Two of my brothers were five before we could understand them although my third brother, who could speak clearly from an early age, apparently could interpret for us.

We had speech therapy starting in kindergarten. This was a long time ago before there were many services available.

I remember the frustration of speech therapy. I learned how to speak by learning how to read. Phonics was tough and I've never mastered it. Learning to speak and understand a second language was tough although learning the written language was fine. The voice and articulation class I took in college was supposedly an easy A and turned out to be my toughest class. I could not reproduce what the teacher was saying until she learned to tell me what part of my mouth to use - where the chin should be and where the tongue should be for each sound.

Eventually, the shyness wore off. I still have to ask for the spelling of new names and words.

Two of my sons had similar language delays to a lesser degree. The oldest had the same problems learning a second language and gave up after three years of bad grades. I taught them english by explaining how their jaw and tongue should be for each sound just like I had learned. They still ended up in speech therapy but apparently it is a lot more fun now. The youngest went through child find at 2 1/2 and failed every test (he only had a couple of words at the time) and we didn't qualify for services because they thought he would improve on his own. He did learn to speak by about three years old but it was a frustrating time for us because we would have to guess at what he wanted. He goes to school with a lot of ESL kids now and I think that is why he has such a good attitude about working on his speech. Some of his friends have a lot more work to do to learn english while he is fine-tuning.

I was teased by my parents and others when I mispronounced words. I remember thinking that it was just like being bad at sports and not making a huge deal out of it. But it is frustrating.

I have friends who've taught their children sign language to alleviate frustration. Music has been an important part of my children's lives. And for kids with language delays, it is surprising to me that they all enjoy acting. We've also enjoyed Jim Weiss' recordings - stories of all kinds - rather than TV. His stories helped them learn a lot of new language even if it was a long time before they could reproduce it. I think taking away the picture helps children focus better on the story and it's really nice when your voice is gone by the end of a long day.

Good luck. We turned out fine in the end but it must have been difficult for my mom. Thanks for posting your message. I never had an official label for why we didn't speak - just that it was a processing issue - and I've just spent an interesting 1/2 hour researching the different possibilities.

Hi M.- my son, 28 months, has many signs of apraxia. Our early intervention services in Baltimore County has done very little for him, seeing him only once a month. I finally got very frustrated and started him this week in private speech therapy. She said it will take her a few visits to make the diagnosis but that he definately needs once or twice weekly help. Her suggestion was to get in front of him on his level so he can watch your mouth and then in a slow singsongy voice say the words you want. For example, if you want him to say "help me." you would say to him, say help, he says it, say help me. Being 2 and in the no stage, it doesn't always work, but I am hoping it gets better. I found it helps to have someone other than you practice with him (with me, he has little patience and wants what he wants right away, with someone else, he is more likely to be patient and do what they ask, but that is just my child.) Good luck.

My friend's son was also diagnosed with apraxia but at 4 and lost so much time and therapy. I know his mom has him in private speech 2 times a week and she has worked miracles. Does your sonhave any other disabilities such as hearing and sight. There are ton of services through your county. My friends son was in preschool very early and now goes to the Maryland School for the Deaf daily. He should have started kindergarden but given his disabilities, he's starting next year.

I also know that she is on a message board for apraxia. I would suggest signing up for those boards. You obviously know that other parents are great resources.

Be strong. I watch my friend with her son and she is amazing. She gets frustrated and down just like any parent; however, I see her and it makes me want to be a better Mom. I know that if I could only give half of what she gives to her son then I my kids will feel beyond loved and supported.

My son was delayed speech/information processing disorder/communication disorder (nonspecified). Though, after much research, I believe he needs to be reevaluated for developmental apraxia. http://www.nidcd.nih.gov/health/voice/apraxia.htm Initial label came when he was 36 months. He began speech therapy. We later felt led to homeschool our children. Our son is now an outgoing, highly verbal young man of 10 who is confident and takes his time speaking. He still makes mistakes using some words and phrases and we are revisiting the matter of speech therapy. He is now without speech therapy, except for language arts lessons at home. He struggles in writing, math, reading, etc., but can master these skills with practice, patience, and time. My daughter was also delayed speech, and has some problems with apraxia, but not as pronounced and drs recommended not reevaluating until she's a little older (5 or so.) How to survive? Be patient. Repeat instructions, making sure your child has eye contact with you. Plan a reward system. Agree on a discipline system, making sure you repeat why child goes into time out for infractions. Sometimes, noncompliance comes because these children miss the instruction. Have faith and be prayerful. You'll need the inner strength to endure. Read often to your children! They will hear the language and learn to model it appropriately. Play word games, make letters using playdough and sound out the letters phonetically. The more he hears it, that should reinforce the speech lessons. Watch this program: A Place of Our Own, for great project ideas for preschoolers that can be adapted for all ages and abilities. Believe it or not, helping our children express themselves in other ways helps build their confidence and helps ease their frustrations. Both of my children respond to art therapy, one to music and the other to drawing. Both love painting. Have safe manipulatives around so that your son can destress after a lot of language activity. And, get a good support system of friends, ones who understand what you are going through. Friends who do not have a related experience sometimes think you are overestimating the frustrations. You might find your child delayed in multiple areas (like writing, balancing, throwing, etc.) Take comfort in knowing that all can be overcome with love, guidance, and patience. Online support groups are available, too, if you do not have one in your area. The best one I've found is GT-SPEC-HOME. There, you may ask a question and parents around the country reply! To subscribe, send mail to ____@____.com with the command (paste it!):
SUBSCRIBE GT-SPEC-HOME. Also, a great Web site is allkindsofminds.org. Dr. Mel Levine is the author of such books as "All Kinds of Minds" and "The Myth of Laziness." Read more about him at http://www.allkindsofminds.org/about_biography.aspx. I have tons of resources and often find classes in the area. If you need help, send a note.

Sorry, no advice...your message made me want to vent!

My sister has a daughter who is 3 years 7 months and doesn't talk and my sister has done NOTHING for her. My niece babbles, screams, points, etc to communicate but has a spoken vocabulary of at most 10 words. I'm so furious w/ my sister about this. She keeps saying that her daughter is "fine" and even went off on the pediatrician for suggesting that something may not be right back at her 2yo check up.

I know that early intervention and services yield the best results but my sister is so doggone stubborn and in complete denial about it. Part of me says its not my problem b/c its soooo difficult dealing w/ my sister. But my conscious knows that my niece REALLY needs some help and I don't know what to do that won't end up w/ me getting cursed out and verbally abused by my sister.

Sorry for the vent. Your request made me wish my sister was as on top of things as you are...

My son is 14 and amazing, we really took advantage of all the county sponsored therapies.Head start was free and they had better slp's then we had found through our insurance.We had to show matthew how to sign at first but he speaks clear now with a slight lateral lisp,if you listen to him you understand him.Have faith and learn the state laws to provide your son with free education.

I have a son who is struggling in school right now and he has Celiac disease. This link might help you a little to relate to some people and give you some insight. www.celiac.com/gluten-free/index.php?showtopic=32366
I hope it helps. A.

Depending on your insurance, I would see if you can get an evulation at kennedy krieger. I have worked with them in the past and they are very good.

http://www.kennedykrieger.org/