I need a hug this mornign---UPDATED after his appt

6fsn · August 2012

Preface: On a scale of 1-10 I know this is not a 10, but it is something I'm struggling with.

Y'all know that 6let has been in speech classes for 3 wks. At the end of his last appt. the therapist says "I think this is something different than what we were dealing with. It appears more to be apraxia." She goes on to explain that basically the mind can't tell the mouth how to form the word. It felt like no big deal. She gave me a website to look at and sent us on our way.

First of all I look at the .com site which is all about autism. So after that breakdown I realize that it's .org.

The site starts talking about brain lesions and learning disabilities and special education. I thought we were just looking at what longer speech therapy, but now I'm left wondering if this is going to be a lifelong struggle.

I'm pissed that the therapist just gave me a website and sent me on my way. You know that one website leads to another to another and how Dr. Google can turn a runnny nose into imminent death. So I've spent a week going from denial to tears to denial to reading to denial to tears. I have a million questions but I'm afraid I'm just going to cry through this whole appt.

Now I've also realized that we only have 5 mins at the end of therapy. I screwed up and should have called ahead for more time or e-mailed the questions so she could be prepared. I've been a mess all morning. Hopefully I can cry it out this morning and not do it later.

tawillers · August 2012

::hugs::

Ask as many questions as you can. If she cuts you off after 5 minutes, let her know you'll email her the rest.

She didn't suggest what to do from here? I'd be very upset about the website rec and nothing else.

I know it has only been a week but have you thought about getting another opinion? Is the apraxia a diagnosis? She said she "thinks" it could be? This doesn't sound like she's very confident.

I'm sorry she caught you offguard. She should have spent more time with you.

VarunaTT · August 2012

You didn't screw up. Write down your questions and take her time. Good medical providers will give you the time you need, no matter their schedule. If there's one thing patients will understand in my experience, it's the "I'm sorry I'm late, we had a patient with a lot of questions". B/c they're going to be that patient someday too.

I found this (I started googling b/c I didn't know what it was). I've never heard you say any of these things about 6let: http://www.asha.org/public/speech/disorders/childhoodapraxia.htm. And honestly, that sounds like a throw away diagnosis. I hate it when medical professionals do that. It was pretty damn unprofessional of your therapist.

Good luck. [[[[[hugs]]]]]

AuntFlo · August 2012

I agree with everything Varuna said. {{{hugs}}}

The therapist needs a kick in the shins for doing that to you.

zsazsa-stl · August 2012

And remember that you know your kid. I'm pretty sure you would have noticed by now if he was delayed in any way. You know that he is a smart, sweet, high functioning kid.

6fsn · August 2012

Update for now: My SIL just finished her master's in special ed with a focus on speech. She called this morning and has made me feel a lot better. I am very thankful that we are now living in a place that has the help available.

The highlights:

- Yes there are many, many degrees of apraxia. Based on what she's seen of Matthew she would put it on a mild end. On a more severe end the kid would have a hard time retaining the skills he learned from one day to the next. Clearly that is not a problem because he's getting better at the words.

- If there were something biologically going on (stoke, lesions) then he would most likely be showing delays in other areas. It's not a gaurantee, but they probably wouldn't do further testing at this point.

- As for the actual diagnosis. She said that a lot of times there is some pressure on therapists not affiliated with school to have a diagnosis. It helps the parent get insurance coverage and it gets them and the hospital paid. So sometimes they will put in a diagnosis as a financial cover their ass and admend it later.

- I expressed concern about the diagnosis sending him into some alternative school path. She said the good thing is that there is such a massive push to keep kids together that even if this is a correct diagnosis they won't shove him in a corner. Then also reiterated that most likely it's going to be just a longer amount of therapy as opposed to anythin more intensive.

- She also commented that he was late to talk and that he was in daycare his first year without the one on one speech and the higher level of speech. These things can also lead to delays. She went on to say that she has seen a significant increase in his speech ability over the last year that also leads her to believe that his would be a milder form. (this is not a comment on daycare in general, just the ones in BFE)

- I also mentioned the autism site. She said that a lot of kids on the autism spectrum have apraxia so there is a link, but it's not that there is a higher rate of autism in apraxia kids.

- Overall I'm feeling better after talking to her. At the very least I should be able to get through this appt.

AuntFlo · August 2012

Silly 6 - why didn't you contact SIL about this last Friday instead of worrying about it all week?

VarunaTT · August 2012

I'm really glad she made you feel better. Good news!

*Barbie* · August 2012

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/special-topic-wedding-boards_wedding-woes_i-need-a-hug-this-mornign?plckFindPostKey=Cat:Special Topic Wedding BoardsForum:47Discussion:9b56b0c0-80f4-4fb9-bb12-5c461a9f5a93Post:eb5d89d8-8952-4f4b-8bbb-7cc0b0379ef3">Re: I need a hug this mornign</a>:
[QUOTE]Update for now: - She also commented that he was late to talk and that <strong>he was in daycare his first year without the one on one speech and the higher level of speech</strong>. These things can also lead to delays. She went on to say that she has seen a significant increase in his speech ability over the last year that also leads her to believe that his would be a milder form. <strong>(this is not a comment on daycare in general, just the ones in BFE)
</strong>Posted by 6fsn[/QUOTE]

i'm not a trained medical professional, but I'm a bit doubtful over how much this has to do with anything. Wolverine has friends (from my mom group) who are with their SAHM / grandparents all day and getting plenty of 1-on-1 interaction. She has been in daycare since 4.5 mo (granted, it's a good one that is an accredited school) - and she's the chattiest kid in the group ( and one of the youngest).

I hope your SIL isn't saying stuff like that to the parents of her kids, because it would probably just make them feel like it's their fault that their kid is having issues, because they sent their kids to daycare.

It sucks that you got so worried, but i agree with PP that the doctor should be able to sit with you and discuss longer than 5 minutes, even if it means she's a few minutes late for her next appointment. I think the important thing is that you're getting 6let the help that he needs and he's making progress.

6fsn · August 2012

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/special-topic-wedding-boards_wedding-woes_i-need-a-hug-this-mornign?plckFindPostKey=Cat:Special Topic Wedding BoardsForum:47Discussion:9b56b0c0-80f4-4fb9-bb12-5c461a9f5a93Post:f81d396a-3b68-46e7-9852-70c2973b4638">Re: I need a hug this mornign</a>:
[QUOTE]Silly 6 - why didn't you contact SIL about this last Friday instead of worrying about it all week?
Posted by AuntFlo[/QUOTE]

It's silly, but I didn't want to put it in writing. Then I couldn't deny it.

MNNEBride · August 2012

So glad your SIL was able to give more insight and make you feel better. Hang in there. 6let will do fine. If there is an issue, it's so beneficial to get therapy he needs early. You are a great mom!

6fsn · August 2012

Barbie- I purposefully put the disclaimer on there so that it would not come across as a slam on daycares in general. One of my reasons for staying home was the level of care that was available in BFE. His main provider was a hs drop out with a GED and his secondary one was a hs drop out period. They had poor grammar and speech.

*Barbie* · August 2012

Yeah - I know that you weren't slamming DC in general. Even so, what she said could come across as a slam against you for sending him to the daycare that you did, for as long as you did. From what you have explained to us about 6let it sounds like it's more of a medical issue than an environment issue. After all, he has been staying at home with you for (2?) years and is still having the speech issues. I'm just saying that she should be careful in saying something that comes across in blaming the speech pattern of the caregivers. I can see parents getting upset if she said something like this to them.

Heffalump · August 2012

Lots of hugs. It sounds like a rough cycle of reading/crying/denial. I'm glad you talked to SIL and she could help. Hang in there.

Also, it was crappy to just give you a website and leave it at that.

6fsn · August 2012

Here's the scoop. She said that she is not officially diagnosing him with apraxia, but is approaching his therapy like he has it. He was originally referred as an articulation, but she believes he also needs some help with phonetics- the 3 syllables and intonation.

She said that at this time she does not think he needs any other sort of medical testing or intervention. They are looking for overall improvement which he is certainly showing. If he does not continue to improve we would explore other issues. She said that she can't say for sure he will get better, but based on what he's already accomplished she thinks he will. As long as he is improving she doesn't think we need to up the amount of therapy per week.

She did look up our insurance and said it would cover ~12 sessions. She said around the 7 wk mark we'll evalutate if he needs more than that. If so she will write a letter to insurance on our behalf for more coverage.

She also said that he appears to be a visual learner. She wants to work on intonation and stressing the right syllables in the same words. Next week she's setting up a thing were he speaks into a microphone and can visually see the the stressing. She also said that learning to read will probably help because he'll see the words have more syllables.

So, overall it was a good visit. She did apologize for how she approached it last week. She also gave tips from him approaching preschool.

VarunaTT · August 2012

Hey, I knew I liked 6let! I'm a visual learner as well. Reading will probably come easy to him. I used to take notes by hand and them type them out. I almost never had to study that way (unless it was to memorize a list or something) b/c 2 visual stimuli like that was usually enough to fix it into my brain.

PMeg819 · August 2012

Ditto Varuna. If I see, I learn! I think you are doing a fabulous job and that you really seem to have more tools at your disposable. Young brains are so moldable, that I bet in a year he'll be doing fantastic.

6fsn · August 2012

DH and I were both visual learners too. Whenever we were trouble shooting we'd have to see what was going on and not just hear it. It made me feel good that she not only recognized this but also has the tools to accomodate it.

(I'm still a fountain of tears and have a horrid headache)

I need a hug this mornign---UPDATED after his appt

Re: I need a hug this mornign---UPDATED after his appt

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