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Grieving Again

post #1 of 11
Thread Starter 

My younger DS was recently diagnosed with multiple issues - LD in reading and writing (math is a maybe), CAS with additional language disorders, SPD, PDD-NOS, CAPD. My older son has some of the same diagnoses. I thought that because I have already been through it once that I would be better prepared this time. Yet I feel like I am standing at the bottom of Mt Everest and am overwhelmed by what's required for the climb. greensad.gif It's the childhood apraxia of speech (CAS) that I am unfamiliar with and the learning curve is steep. Also on my mind is that we had to hire an attorney to get adequate services for my older DS at his public school. I am worried that we will have to take that route again. Thanks for letting me vent.

post #2 of 11

I'm so sorry you are feeling overwhelmed! 

 

I only have one special needs child so I'm afraid I don't have any btdt advice, but our DS does have a tentative dx of CAS, and there is a great book, "Speaking of Apraxia" written by a very well informed mother of a daughter with CAS.  It has been an amazing resource for me as I try to figure out what that diagnosis even means.  Thought it might help with the learning curve :)

 

I will also say that I think you should give yourself permission to grieve and maybe get a little angry at the universe.  Just because you've done it once doesn't necessarily make it any easier.  Though I bet this time you will move through the stages much more quickly and find

that you have the resources and support already in place to help you through the process ahead!

 

Sending hugs. 

post #3 of 11

I feel like I grieve with each additional diagnosis. I also have multiple children with multiple issues. DS1 doesn't have CAS but a therapy buddy of ours does, it's beyond my current knowledge. I know the mom has also had a steep learning curve and she is a pedi herself.

 

Vent away. Some days it is the difference between sanity, and well, not.. 

post #4 of 11
Quote:
Originally Posted by pattimomma View Post

 I thought that because I have already been through it once that I would be better prepared this time.

hug2.gif I think that knowing what is involved may actually make where you right now are a lot worse.

 

 

I'm so sorry that you are going through this.

post #5 of 11
Thread Starter 

Thanks Ladies! I do think Linda hit the nail on the head with her comment about already knowing what all is involved. I am also in my first trimester and have nasty all day morning sickness, add working full time and having five kids, yeah I have a lot going on. I go on Friday to meet with the county director for special ed to discuss the CAS diagnosis. My son has been in speech at school for two years with no progress. As it turns out you can't treat CAS the same way you do other speech disorders.
 

post #6 of 11

pattimomma, yes, CAS treatment usually focuses on repetition of sounds which is exactly the opposite of how most SLPs are trained these days.

 

This is why I cringe when people say "who cares about dx, just get them in speech therapy."  Because echolalia is a concern for kids on the spectrum, most SLPs think of drilling repetition as a Very Bad Thing, but kids with CAS need to try and produce specific sounds and sound combos over and over to train the brain/muscle connection.  All the data says that an SLP using some type of physical queues (like the PROMT method) along with high repetitions are the best ways to help someone with CAS.  I'm no expert, but I would be more than happy to answer any questions you might have about speech therapy for CAS kids :)

 

I know you are feeling overwhelmed, but you aren't alone! 

post #7 of 11
Thread Starter 

Thanks fizgig! Tuesday I took my son for an evaluation at the myofunctional institute so that we could look deeper into the mechanics of his mouth. He has a reverse swallow and hypotonia in his cheeks, tongue and jaw. Lips were ok. The eval was really helpful because the clinician explained how all this affected both his speech and ability to eat. He has always had a limited diet, now I know it's because he has trouble chewing and swallowing properly. Any links to info on CAS you have would be great. Thanks again!
 

post #8 of 11
I'm not home right now so don't have much to send, but by far the best clearing house of info about CAS online has been:

http://www.apraxia-kids.org/learn-about-apraxia/library/

Their research section has summaries of a lot of the actual medical/scientific research out there which I really loved.
post #9 of 11

i agree with fizgig on this one it is hard to treat it but it can be done it just you have to spend a lot of time teach them how to say things the right way i dont know if you know how to sign but i did sign with my son and also work with his speech and how to sound things out but then again my son is only has part of his hearing so that is another reason why i have teach him how to sign but dont feel you are alone and it is very overwhelming at times i know been there done that 

post #10 of 11
Thread Starter 

I have been checking out the apraxia kids website, thanks fizgig! I went back and looked at my DS's OT report and he was described as dyspraxic there as well so apparently this apraxia/dyspraxia affects his whole body which completely makes sense.

 

unuselyriver, My son knows some sign language as do I. He also has auditory processing difficulties.
 

post #11 of 11

oh ok pattimomma it looks like me and you have been thru some of the same thing with are boys but i love him and he has teach me to be thankful in every way

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