Support groups

Michelle - posted on 01/01/2011 ( 13 moms have responded )

0

0

1

My 3 year old son was diagnosed with apraxia about a year ago. I've had a hard time dealing with it or just finding another mother who understands what I'm going through. I looked into support groups for parents with autistic children, but I found my issues where different then theirs. I just feel alone. Now I'm paranoid because I have a 1 year old boy and I am so nervous he will have apraxia too. Though he is showing no signs of he is still too young to tell. My 3 year old regressed at 18 months. He had more word at 15 months than he does today, but his cognitive is better. I guess I'm just looking for any help, suggestions on what has worked for your child and for you.

MOST HELPFUL POSTS

Sarah - posted on 07/26/2013

1

0

0

Hi. I have 3 beautiful children. A 3 year old and 2 year old boy/girl twins. My boy twin was just diagnosed with severe speech apraxia. I felt is if something was wrong but everyone kept telling me that he would talk when he's ready. Well, my gut couldn't wait any longer. I don't know much yet as he was just diagnosed wednesday. I can read a million things on the internet but it doesn't seem to help. I have labeled him as my wild child. He never slows down and is a spitfire. I know he understands everything I say despite being able to communicate verbally. When he had his assessment they were blown away at how smart he is. I am beyond frustrated at this point. He has a very hard time listening and following rules and is always crying. He will do the same thing 10 times in a row that he has been punished for. It's been very difficult for my husband and I or all of us for that matter to function with all the stress he adds. Is this just part of his frustrations with not being able to communicate? How do other kids with apraxia behave as toddlers? I'm ready to pull my hair out! I need help!

Lori - posted on 04/01/2013

4

0

0

Hi Michelle, I just found this site and recognize your post is old, but are you still in this support group? My son is 13 and we have had quite the ride, but he is doing FANTASTIC now!!! Would be happy to share info. or my story if you are interested. Good luck....It gets better...

13 Comments

View replies by

A - posted on 05/16/2013

9

0

4

Devin's Speech Project

Hello,
I have a son with speech apraxia and selective mutism. I have been putting together a presentation project to help him overcome these issues. So far it has been working really well. I have put what is essentially a rough draft up on my blog. The program may help other kids and I am looking to make it available to others for free. While this project likely will not be perfect for every child, we look to share the project because it has had a big impact on him. I appreciate and feedback or ideas anyone might have on improving or sharing this effort with others.

Please take a look.

Online at: http://theloosecannon.net/
Email me at: aloosecannon@fuse.net

Thanks for your time,
M. Ramsdell

Lori - posted on 04/29/2013

4

0

0

Hi Lisa, Life with a child with Apraxia can be quite interesting at times....my son who is now 13 has turned out to be one of the sweetest kids you will ever know! He has a twin sis who has had very strong verbal skills at a very young age. He has had and continues to struggle with everything while everything comes so much easier for his sis, but he takes it all in stride.... So, does your son receive speech therapy? Does he need PT and OT also or just speech? Does he have other siblings? Sorry I have a million questions, but it helps me to know how much of our story is applicable to yours.. I know it might be scary right now, but with the right help and support your son will grow up to be just fine. I hope to hear back from you soon.
Lori

Lisa - posted on 04/25/2013

1

0

0

Hi Lori, I was just searching around for some advice as well for my recently turned 4 y.o. son who has apraxia. He's getting better - very slowly - but is still very hard to understand. He's pretty bright and very emotional but is having a tough time being at preschool with regular kids. He's very shy & scared of other kids. He cries a lot when I take him to school twice a week. I am worried about his anxiety and unhappiness and his acclimating to more school next year.
I'd love to hear some words of advice and your story as well. Thanks!

Traci - posted on 02/14/2012

5

13

1

Hi Donna,

Not sure what a PEC book is. Probably pictures that say the words for Matt? What part of the country are you in? We don't see much progress with Brendan. It's a very slow pace for us. I feel that I really need someone to talk to these days. There aren't any support groups around us and I don't think I'm at the right stage for myself to start one. LOL Does Matt go to school yet? I think it's amazing that you're raising your Grandson, you must be a very special person/grandma. Please right back when you get a chance. Thanks for responding. Traci

Donna - posted on 02/11/2012

8

8

1

I am raising my 4 year old grandson who has apraxia. I know, first hand, how hard it is. My heart breaks for him. He is extremely smart and very loving. We use a PEC'S Book to communicate. Have you tried that? He has improved greatly in the last few months and says some words. Keep the faith, there are many new treatments for our kids! I have faith my Matt will speak. Please write back if you want to talk. I have big shoulders!

Donna

Traci - posted on 02/10/2012

5

13

1

My son, Brendan, was diagnosed with Global Dyspraxia about 2 years ago. He is now 4 1/2 and has about 5 words. His neurologist at Dartmouth Hitchcock has said that Brendan is the most severe case he has ever come across. Along with the global dyspraxia/apraxia he has mild cerebral palsy. So far his school has been really great. He's been allowed to go to school 5 days a week instead of the 3 day /2 day pre-school schedule. He has a speech therapist at school that he sees for a total of 1 hour a week, an OT he sees once a week and a PT (FINALLY) that he sees for a half hour a week. On top of that we have him in private speech therapy and OT twice a week for 2 half hour sessions each. We drive to another state an hour away twice a week for this. We have taken some sign language courses, bought sign language videos for him as well as books that deal with apraxia on a childs level. We also recently acquired an AAC device for him. We've been told that Brendan will never speak. We hold out HOPE!! Brendan is a very happy little boy. He engages with others very well. He articulates all day long and with everyone. Although nobody understands any of it. His secondary communication is sign language and as of now he will only use his device as a last resort. He prefers to "talk." I guess I'm here because I need support. I feel as if I'm going through the 7 stages of grief but not in order. lol Denial has passed. Hope has always been there. I've been struggling with guilt and depression. Starting to feel angry and cheated for my son..Loneliness because I have nobody to talk to about this. I need to talk with anyone who understands what we are going through...especially people who have "been there done that." I need tips on how to potty train, how to answer questions Brendan will eventually have and how to answer ppls' questions about him(I do try to educate but sometimes I want to lash out) I want to know that there is hope! Brendan is cognitively very smart. He "tests" high what ever that means. I would truly appreciate anyone willing to get back to me. Thanks

Holly - posted on 02/26/2011

10

0

5

You are welcome, Melissa -- I know how frustrating it all is. You are smart to do the further testing to be able to dialogue with the school on a level that makes sense -- especially if they don't understand apraxia ( which is often the case). I know with our son, he's truly a little of this and a little of that -- global/verbal/oral apraxia just being part of it. It can be a gooey, sticky. messy web sometimes, but with the right resources and patience, it all gets sorted out. I'm glad you found the right therapist to help you work through all the nuances of apraxia and aphasia and that as well. Finding an SLP with knowledge and experience in childhood apraxia of speech is like finding gold! That is awesome. I'll look forward to hearing more about Dylan's progress.

Melissa - posted on 02/26/2011

97

26

17

I thank you so much I am always interested on learning how others deal with this.Its nice to know alot of what I expiriace is simaler to others. It would be nice to here from other mothers that have teens that were diagnosed at a young age and how they got threw it and how the kids are doing!!!! To give us moms and dads hope.I wish they would do somthing on TV that explains Apraxia and the differences of a delay and a biologicle Apraxy and Aphasia and there are simmilar things that go with it . I finally got Dylan a great speech theropist and he has taken to her she is amazing and pataint with him.I am so tiered after his lessons I need a nap....lol. he now has speech 4x a week he is being tested for other thing and to rule out things.The school was giving me a hard time and was saying they wanted me to take him to the doctors and give him meds for ADHD I was so angry at there ignorance on Apraxia and that his behaviers were due to frustration not because he had ADHD and even if he did medication was not an option because of trying to retrain the brain for speech I dont want to mess that up because he dont sit at circle time!!!!! So I took him to a nero phyic and had him tested out side the school and so soon I will have the results to that and ends the school buggingf me on that...LOL we moms are our childrens voice and somtimes you need to take things to a new level when people arnt listening.

Holly - posted on 02/25/2011

10

0

5

Hopefully you have found some good resources to help you in your community and online. If not, let me know. My son is 14 and was diagnosed with profound apraxia before he was two (which was pretty rare back then). He speaks pretty well now although still has a lot of articulation issues:he is often misunderstood as if he's from another country. That said, we've been around the block and I'm happy to help you find resources, be a sounding board or whatever....

Melissa - posted on 01/09/2011

97

26

17

I understand what your going threw,because my son looks normal untill he speaks and people dont understand what he is saying.I kind of use it as a learning expiance and tell people about Apraxia and explain that he understands what your saying he just hasnt developed speech while he was growing in uteral.So now he needs to goto speech theropy for it to help his brain to rerout speech.Somtimes behavier is a big thing because of their frustration with not being able to communicate with other kids and he gets agressive with them.this is a good place to start,though I see alot of people dont use it like they should because I see alot of older posts but maby its just because moms are unaware of such a good resource.But it is nice to read about what others experiance and compair what your going threw.Write me any time and add me

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms