I’m tired

klauss · 04-21-2021, 09:51 PM

Seems like every time we get even slightly ahead with our son, something comes along to knock us back a bit. The speech therapist believes he may have apraxia of speech and wants to significantly increase his ST sessions, from bi-weekly to twice a week. Which our insurance has a hard cap of 25 sessions a year and appeals are almost always denied. We can’t even come close to being able to afford 75 sessions a year.

When I brought up an AAC device, the rep could not even find anything on them in the policy. So not sure if any of the cost for that will be covered.

Still has most of the other issues to one extent or another.

I hate to say it, but I’m tired. It’s burning me out and it feels as there is no relief.
I’ll keep plodding along doing the best I can for him, but it sure would be great to catch a break in some way.

Sorry for the rant guys.

44044 · 04-21-2021, 11:38 PM

You will find the strength Sir...

Ask where he is getting his ST if

there is any outside funding to help

aviator · 04-22-2021, 07:44 AM

Klauss, perhaps try a different doctor or therapist. Is he autistic? There are specialized schools for autistic children, Apraxia is related to autism but today doctors have fancy names for everything and a $olution for every problem.

My youngest son had an issue when he was younger regarding speech, he was just lazy and my wife took him to every child psychologist she found, eventually he outgrew the problem and today he's a millionaire business owner, his boy is the same way, he'll talk his own little language sometimes but I have sat with him and he can talk, he's just lazy and I myself was taken to the doctor when I was four because I wasn't talking yet.

As I said, try a different doctor maybe?

klauss · 04-22-2021, 02:18 PM

We had him evaluated for Autism last November, and he showed almost no signs. Although he will be re-evaluated sometime later this year.

He’s seen a developmental pediatrician, 2 different speech therapist at 2 different hospitals. They all agree he has a speech delay, only slightly disagree on the severity. The Developmental pediatrician believes he has the verbal expressive speech ability of a 4-6 month old( as of December) and both the ST’s place him a little better at 7-9 months currently.

He also has CVI, at high level phase 2 or low phase 3 depending on which doctors you ask. 1 places him at high 2, other low 3. Kids with CVI are often misdiagnosed with autism, especially if they are nonverbal.

It’s entirely possible that his CVI is hurting his speech development, but it is difficult to say for sure.

In combination with his other health issues ( fortunately not life threatening) is a big, complicated jumbled mess. I don’t think we can get it figured out anytime soon sadly.

aviator · 04-22-2021, 05:19 PM

Can he understand a verbal command when you guys talk to him? He may just be a slow talker. CVI is often misdiagnosed, several symptoms must be present before making a diagnosis. But yes, CVI may hurt his speech function.

Klauss I wish you guys the best of luck on this, it's a tough situation. Hopefully things will get better as he grows.

klauss · 04-22-2021, 07:45 PM

This is how he looks at almost all videos and educational materials. One of the TVI’s calls it an eccentric viewing point.( hope picture works lol)

His receptive speech is almost normal, we can ask him to help with simple chores( picking up toys, throw ball for dog, etc). He has had the CVI range performed several times, by different staff and all but the first one indicated CVI. The first range was performed in the wrong environment which invalidated the results.

Thanks for the well wishes guys. It’s stressful but I’m sure in the long run he will be fine I just need to do everything I can to help him either get better or adapt to his limitations as best as possible.

ColonelKorn · 04-23-2021, 09:32 AM

The one person I have known with some sort of speech delay did not speak intelligibly until she was 9 years old. She is of above normal intelligence, but turned out to be bipolar.

04-21-2021, 09:51 PM	#1
klauss Poof no eyebrows Join Date: Mar 2006 Location: Somewhere in the USA Posts: 4,064	I’m tired Seems like every time we get even slightly ahead with our son, something comes along to knock us back a bit. The speech therapist believes he may have apraxia of speech and wants to significantly increase his ST sessions, from bi-weekly to twice a week. Which our insurance has a hard cap of 25 sessions a year and appeals are almost always denied. We can’t even come close to being able to afford 75 sessions a year. When I brought up an AAC device, the rep could not even find anything on them in the policy. So not sure if any of the cost for that will be covered. Still has most of the other issues to one extent or another. I hate to say it, but I’m tired. It’s burning me out and it feels as there is no relief. I’ll keep plodding along doing the best I can for him, but it sure would be great to catch a break in some way. Sorry for the rant guys. __________________ alterius non sit qui suus esse potest!-"Let no man belong to another who can belong to himself." Heîs oiōnòs áristos, amýnesthai perì pátrēs- "There is only one omen, to fight for one's country"

04-22-2021, 07:44 AM	#3
aviator unum de multis Join Date: Mar 2006 Location: Bunker's Headquarters. Posts: 52,391	Klauss, perhaps try a different doctor or therapist. Is he autistic? There are specialized schools for autistic children, Apraxia is related to autism but today doctors have fancy names for everything and a $olution for every problem. My youngest son had an issue when he was younger regarding speech, he was just lazy and my wife took him to every child psychologist she found, eventually he outgrew the problem and today he's a millionaire business owner, his boy is the same way, he'll talk his own little language sometimes but I have sat with him and he can talk, he's just lazy and I myself was taken to the doctor when I was four because I wasn't talking yet. As I said, try a different doctor maybe? __________________ "Government is not the solution to our problem, government is the problem." Pesident Ronald Reagan

04-22-2021, 07:45 PM	#6
klauss Poof no eyebrows Join Date: Mar 2006 Location: Somewhere in the USA Posts: 4,064	This is how he looks at almost all videos and educational materials. One of the TVI’s calls it an eccentric viewing point.( hope picture works lol) His receptive speech is almost normal, we can ask him to help with simple chores( picking up toys, throw ball for dog, etc). He has had the CVI range performed several times, by different staff and all but the first one indicated CVI. The first range was performed in the wrong environment which invalidated the results. Thanks for the well wishes guys. It’s stressful but I’m sure in the long run he will be fine I just need to do everything I can to help him either get better or adapt to his limitations as best as possible. Last edited by klauss; 04-22-2021 at 07:52 PM. Reason: Attempt to add picture.

04-23-2021, 09:32 AM	#7
ColonelKorn High Priest of Honkydom Join Date: Feb 2014 Location: Cheetahstan Posts: 9,542	The one person I have known with some sort of speech delay did not speak intelligibly until she was 9 years old. She is of above normal intelligence, but turned out to be bipolar. __________________ I am an enraged asswipe

04-21-2021, 11:38 PM	#2
44044 slug Join Date: Apr 2010 Location: swampeastmissouri Posts: 50,933	You will find the strength Sir... Ask where he is getting his ST if there is any outside funding to help

04-22-2021, 02:18 PM	#4
klauss Poof no eyebrows Join Date: Mar 2006 Location: Somewhere in the USA Posts: 4,064	We had him evaluated for Autism last November, and he showed almost no signs. Although he will be re-evaluated sometime later this year. He’s seen a developmental pediatrician, 2 different speech therapist at 2 different hospitals. They all agree he has a speech delay, only slightly disagree on the severity. The Developmental pediatrician believes he has the verbal expressive speech ability of a 4-6 month old( as of December) and both the ST’s place him a little better at 7-9 months currently. He also has CVI, at high level phase 2 or low phase 3 depending on which doctors you ask. 1 places him at high 2, other low 3. Kids with CVI are often misdiagnosed with autism, especially if they are nonverbal. It’s entirely possible that his CVI is hurting his speech development, but it is difficult to say for sure. In combination with his other health issues ( fortunately not life threatening) is a big, complicated jumbled mess. I don’t think we can get it figured out anytime soon sadly.

04-22-2021, 05:19 PM	#5
aviator unum de multis Join Date: Mar 2006 Location: Bunker's Headquarters. Posts: 52,391	Can he understand a verbal command when you guys talk to him? He may just be a slow talker. CVI is often misdiagnosed, several symptoms must be present before making a diagnosis. But yes, CVI may hurt his speech function. Klauss I wish you guys the best of luck on this, it's a tough situation. Hopefully things will get better as he grows.