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New to Apraxia

Posted by on Apr. 19, 2010 at 11:18 PM
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Hi everyone! I am new to the group as well as to Apraxia. My son has been in speech therapy for about 8months now. At his 6month mark they did an eval and they said they think he has apraxia. I was so taken back by that, it was like a blow to the gut when she said it. The funny thing is that over the past few months I kept saying "it seems like there is a miscommunication between his brain and mouth". At that time I head no idea what apraxia was.

Let me go back a little and tell you about my boy. Stephen is now a happy healthy three year old. When he was little he did not do much in the way of baby talk. He was a very good quiet baby. He did say mama and dada at about 9-10months old but then nothing else for a very long time. He had very bad ear infections and ended up with tubes being put in around 18months of age. About a month later we had him evaluated through EI and they said he had a speech delay but that it was probably because of his ear infections. We did not start speech therapy at that time because we were moving in 6weeks. After our move up north it took a while for me to get any info on EI up here so I ended up going through our insurance company. We had him evaled again and this time they said he had an "extreme speech delay" and started therapy a few weeks later. He has had 2 hearing tests done since then, one came back at the very low end so we had a follow up a few months later and that came back normal.

 so here we are today. I have a three year old with Apraxia. Well that is what they think. I was told he is to young and not saying enough words to diagnosis him just yet.  How do I get a diagnosis? Does the therpaist give it? or do I have to talk to his ped and see specialists?

by on Apr. 19, 2010 at 11:18 PM
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Replies (1-10):
bribren
by on Apr. 20, 2010 at 10:43 PM

My daughter was given a tentative diagnosis when she was almost 3 she wasn't given a full diagnosis until she was 4 her speech therapist was the one to diagnose her. She has been in speech therapy since she was 15 month she is now almost 5 her speech has sky rocketed in the last 12 months she is still waybehind but her speech level is now that of a 3.5 year old. The best thing you can do for a child with apraxia is get them therapy.

cgfairy
by on Apr. 21, 2010 at 10:13 PM


Thank you. We do have him in therapy 2 times a week for now. When he seems ready to go more often we will up the days, he gets worn out  and does not do well with therapy more then twice a week. Tomorrow we area trying something new at therapy, group therapy. He has made a new friend, she also has apraxia and may have aspergers, anyway the 2 of them do so well together and encourage each other on a level I have never seen before! They communicate with out talking or signing! She has never "played with" another child like she plays with him and he even got her to sit in the sandbox, she has sensory issues and would not do that before she met him. They both had a few hard weeks and then we started doing playdates and they started doing better in therapy(we go at the same time on thursdays) so we figure it is worth a shot to see how they do together.

I have seen a huge change in Stephen's speech since we started therapy about 8 months ago but he is still way behind. A few months ago he was put at a 15month level, that was hard to hear. It is wonderful to hear the progress your daughter has made in the last year.

 

 

Quoting bribren:

My daughter was given a tentative diagnosis when she was almost 3 she wasn't given a full diagnosis until she was 4 her speech therapist was the one to diagnose her. She has been in speech therapy since she was 15 month she is now almost 5 her speech has sky rocketed in the last 12 months she is still waybehind but her speech level is now that of a 3.5 year old. The best thing you can do for a child with apraxia is get them therapy.


SpunkyCristine
by on May. 1, 2010 at 12:44 AM

I've worked in a center with speech therapists for over 6 years and your son should be getting faaaarrrr more than 2 hours of speech if he may be apraxic and has had little progress!  Also, all of the research says NO GROUP THERAPY for apraxia!  For other delays, that's fine, but NOT for the speech!  Do your research...get more involved because earlier intervention is so important and you are not currently getting what your child needs!

SpunkyCristine
by on May. 1, 2010 at 12:53 AM

My daughter may be apraxic but too early to dx, - she's had svs since 15 mos and she's now 20 mos, they are now bumping her up to 6-8 hours from only 2 per week.  They are treating her well because I work there, but it is federally funded so they will not support anything that is not proved by data and apraxia is allowed a lot of hours due to the research on it and even when funded by the school district when a child is over 3, many parents have been successful in continuing to get more hours than offered and individual vs group, due to sighting the research behind it.  You seem like you need to talk to other professionals and parents about what apraxic children need and typically get because it doesn't seem like your current speech placement is doing you any favors...they may be ill informed on this specific disorder.   

cgfairy
by on May. 3, 2010 at 3:56 PM

Wow I feel alittle attacked right now. The speech therapy my son is getting is all he can handle right now. We have tried to do more but he gets frustrated and shuts down, so for now twice a week is all we are doing. We are also kinda stuck going to where he is now because our insurance will not cover another place. I don't know what the research says about group therapy because I have never read anything about it. The therapy he gets once a week is with a friend of his who also has apraxia and they get therapy side by side in the OT room. He has made huge strides in just the past 2 weeks with starting that! His conifidance level has gone up and he is more willing to try and speek and his sounds are coming out more. So what ever the research says I don't believe it because it is working great for both kids.

 He is not in school right now, we are working on getting him in. I am not sure he will get in untill we have a DX and sadly to get one will take a long time because the waiting lists are so darn long(2yrs). We are waiting on refferals for a developmental ped and a neurologist.

JenPin
by on May. 28, 2010 at 11:26 PM

My son still shuts down because he is embarrased that people can't understand him. He is getting better and that is all we need to keep it together. Speech has been amazing for him but it is a long road. Best of luck

MamaJane
by on May. 30, 2010 at 11:29 PM

 My son is 10, dx at just over 2.  At that time he had 1 hr a week.  At age 3 he had 20 min individual and 40 min group per week.  Seriously.  It was awful, however no amount of research could have pulled funds from no where to get more therapy.  And yes he was overwhelmed as it was.  Once he was in K he was getting speech 4 times per week at 20 min intervals. He's at 75% conversational understanding right now.  100% individual sounds.  Your little guy will improve.  This will be a hard and bumpy road but you are his mom and you know what's best and what he can handle.

kemclaughlin
by on Jun. 13, 2010 at 9:06 PM

I am with you on this one.  My daughter goes twice a week for 30 minutes and she only lasts for about 20 of them.  Speech therapy is hard for the kids and I cannot imagine asking for more from her.

Quoting cgfairy:

Wow I feel alittle attacked right now. The speech therapy my son is getting is all he can handle right now. We have tried to do more but he gets frustrated and shuts down, so for now twice a week is all we are doing. We are also kinda stuck going to where he is now because our insurance will not cover another place. I don't know what the research says about group therapy because I have never read anything about it. The therapy he gets once a week is with a friend of his who also has apraxia and they get therapy side by side in the OT room. He has made huge strides in just the past 2 weeks with starting that! His conifidance level has gone up and he is more willing to try and speek and his sounds are coming out more. So what ever the research says I don't believe it because it is working great for both kids.

 He is not in school right now, we are working on getting him in. I am not sure he will get in untill we have a DX and sadly to get one will take a long time because the waiting lists are so darn long(2yrs). We are waiting on refferals for a developmental ped and a neurologist.


emily1979
by on Jun. 16, 2010 at 9:44 AM

Hi I am new to group. My daughter is 8 and has apraxia.  We jave done speech privately but a lot of the speech therapist here in San ANtonio are not taking my insurance or I have to pay ahead and get reimbursed by my insurance later. I just paid 800 dollars for 4 sessions. I feel torn because I cant afford this, being a single mom but I know my daughter needs help.  My daughter also is struggling in school with both reading and math. Not sure how apraxia effects this. Any ideas?

proudarmywife20
by on Jun. 16, 2010 at 12:44 PM

My son started EI at 18mos old b/c his ped. said he should be talking way more than what he was at the time.  We started speech therapy 1x/wk after 6mos they did an eval and bumped him up to 2x/wk.  In the meantime his ped recommended seeing a developmental specialist since we weren't getting anywhere and he still wasn't talking good.  He could say about 6-8 single words at 2yrs old but nothing else.  No babbling, no mama or dada, he wouldn't even try to talk, he never copied anything we said, or other kids or his bro or sis either.  We saw a Neurologist and they ruled out Autism pretty quick as he has NO other symptom but the delay in speech.  My son is now 3yrs old and has been in EI for a yr and a half and even after his 3rd evaluation and still not even saying 2 words together  and the words he does say all sound very similar, his speech therapist STILL doesn't agree w/ the diagnosis given to us by the developmental specialist who by the way has a child w/ apraxia herself.  His SLP continues to tell us he's too young for a formal diag and he could still pick up and start talking at any point.  Family, friends AND our SLP through EI has continued to tell me things like "oh he's just being stuborn" "he will talk when he's ready", "some kids just start talking later than others"  but we have a 21mo old daughter, who can say more than our 3yr old.  You can tell just by watching him one or two times there is more to it than that.  He works very hard in therapy and he has come a REALLY long way, but it's definately a kick in the face when you see that there is something wrong w/ your child and you can't communicate w/ him or her and ppl are sitting around telling you to let it go don't worry about it he's fine.  I would check into a Developmental Specialist in your area.  We drove 3.5hrs away for our appt and we live in NY.  I hope my story helps, BEST of luck to you and your family!

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