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Posted by on Mar. 30, 2016 at 8:28 PM
  • 16 Replies
Hello! My name is Jennifer. I have an 8 year old girl and a 3 year old boy. My boy has speech and language disabilities. He started the ppcd program in school in December right after turning 3. I guess I joined because some days are hard and I think knowing your not alone and people understand is important. One thing I really dislike is the ignorance of people who assume not talking is the only thing this effects. Oh and why my 3 year old is no where near potty trained. How does not being able to talk keep him from using the toilet. Lol rant over. It effects so much.
by on Mar. 30, 2016 at 8:28 PM
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Replies (1-10):
rebecca_new_mom
by Silver Member on Mar. 30, 2016 at 9:12 PM

Hi Jennifer. Nice to see you here too :). Has your son been tested for CAS (Apraxia)? Is he using sign language or PECS to communicate?

jndavey
by New Member on Mar. 30, 2016 at 9:53 PM
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He hasn't been diagnosed with apraxia. He's been able to communicate his needs his own way. Usually by pointing or something like that. He is able to say words and actually has a good vocabulary. He was in speech therapy 3x a month before school and now he's in school and it helps so much. He's learning all kinds of things. He says things when he wants to with moderate articulation. But majority of the time he mumbles or uses his own jargon and even talks with mouth closed. They did rule put vpi. They hope with a few years of school he can get caught up. Goal is to be out of special education classes by first grade.
Linagma03
by Platinum Member on Mar. 30, 2016 at 10:23 PM
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Welcome to the group! 

rebecca_new_mom
by Silver Member on Mar. 31, 2016 at 12:21 AM
1 mom liked this
With the whole potty training thing, well it's frustrating for sure! My son is almost 4 and still not potty trained :( But we are working on it.
jjamom
by Michele on Mar. 31, 2016 at 6:54 AM
Welcome to the group! Does your son have an IEP? Remember that it is not his disability code that gears services, but his needs. In other words, he may be coded as Speech/language, but if he needs help in other areas, he should get that as well. It shouldn't lock him into a box of getting only speech related services.

My "typical" son didn't potty train until one month before his 4th birthday.
jndavey
by New Member on Mar. 31, 2016 at 9:41 AM
1 mom liked this
That makes me feel better. His teachers told us it takes a long time for kids like him to be fully potty trained. He's not afraid of it and will sit on it whenever you ask but he doesn't understand why. Speech and language were the only areas he was behind in. All other skills were fine. But the language is killer. Not being able to understand just about everything is hard. But 3 months into school and he's learned a lot. But doesn't talk much better.
LadyAmaranth
by on Mar. 31, 2016 at 9:52 AM

((hugs)) and welcome!

Im Hillarie, my three boys(12, 9 1/2, and 8) are on the autism spectrum.

jjamom
by Michele on Mar. 31, 2016 at 10:26 AM
1 mom liked this
Speech delays and disorders can be a long road. It is for my son, at least. He has Down syndrome and speech is one of our long-standing struggles. He speaks in full sentences now, but it has taken several years (he's almost 11) and his articulation is still not great. A lot of people unfamiliar with him can't understand him. He started speech services around 2 1/2 (I wish they would have approved it sooner) and has been getting school and private speech since. It takes a lot of patience, but it is worth the effort!

Quoting jndavey: That makes me feel better. His teachers told us it takes a long time for kids like him to be fully potty trained. He's not afraid of it and will sit on it whenever you ask but he doesn't understand why. Speech and language were the only areas he was behind in. All other skills were fine. But the language is killer. Not being able to understand just about everything is hard. But 3 months into school and he's learned a lot. But doesn't talk much better.
jndavey
by New Member on Mar. 31, 2016 at 11:13 AM
You know I had to fight for the longest time with doctors and stuff. And then his ENT doctor in our small town ended up being the worse. He did the second set of tubes and after that was when the worst issues started happening. I think he messed up somehow. But my son was having these "episodes" where he would grab his ears and scream. Sometimes a few minutes sometimes 15 or more. I kept taking him in for the guy to blame it on his excessive wax making ears and the tubes and we would hold him down and vacuum them out. Even couple weeks for 3 months or so. I had enough after the last appointment and I was in tears talking to my husband on the phone. 2 days later met with a new doctor from Texas children's hospital. We had to hold him down in a straight jacket thing to clean them out properly. But then the doctor seen so many things wrong including fluid, infection, neither tube was in place making the pressure in his ears messed up, granulation tissue with blood and fluid underneath it. Just a hot mess. So we treated those came back 4 weeks got another look without holding him down and scheduled surgery for the next week. His third set of tubes and this time adenoids as well considering they were large and should have been out already, and to check everything else for damage and what not. This was in December right after he turned 3 and right before he started school. These past 4 months have been wonderful health wise. He's had colds but no ear problems. And his progress in school is wonderful even though severely behind.
jjamom
by Michele on Mar. 31, 2016 at 1:25 PM
Oh my. I hope there is no permanent damage. It's so sad when unsuspecting parents happen upon a doctor who doesn't know what they're doing when we're taught to trust and follow their guidance. I hope your son continues with great progress at school. Have they done any audiological testing since the most recent surgeries?


Quoting jndavey: You know I had to fight for the longest time with doctors and stuff. And then his ENT doctor in our small town ended up being the worse. He did the second set of tubes and after that was when the worst issues started happening. I think he messed up somehow. But my son was having these "episodes" where he would grab his ears and scream. Sometimes a few minutes sometimes 15 or more. I kept taking him in for the guy to blame it on his excessive wax making ears and the tubes and we would hold him down and vacuum them out. Even couple weeks for 3 months or so. I had enough after the last appointment and I was in tears talking to my husband on the phone. 2 days later met with a new doctor from Texas children's hospital. We had to hold him down in a straight jacket thing to clean them out properly. But then the doctor seen so many things wrong including fluid, infection, neither tube was in place making the pressure in his ears messed up, granulation tissue with blood and fluid underneath it. Just a hot mess. So we treated those came back 4 weeks got another look without holding him down and scheduled surgery for the next week. His third set of tubes and this time adenoids as well considering they were large and should have been out already, and to check everything else for damage and what not. This was in December right after he turned 3 and right before he started school. These past 4 months have been wonderful health wise. He's had colds but no ear problems. And his progress in school is wonderful even though severely behind.
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