Discouraged - Mothering Forums

Forum Jump: 
 
Thread Tools
Old 07-07-2010, 03:09 AM - Thread Starter
 
sbgrace's Avatar
 
Join Date: Sep 2004
Posts: 9,143
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I just need to get this out where people might understand.

We had an assessment (first in a year for various reasons) for our autism specific therapy (RDI). I have been feeling like my six year old son has made huge gains in certain areas. I had started feeling like autism wasn't going to be his major challenge in life (he's got plenty of others to select from). I'm not saying I thought he was no longer on the spectrum but I just saw it rosy I guess. I had even shared with the therapist how I felt he was past much of the big issues and etc.

And it was horrible. He was entirely unaware in interactions, talked constantly without even noticing partner response, and on. It was just discouraging and I felt embarrassed about painting a picture for her that didn't at all look like the reality. He has made gains (though they couldn't be seen yesterday) but it just hit me in the face how far there is to go to be able to function. I'm worried we won't get there. I am overwhelmed too with all he's got going on otherwise.

Just down.

Rachelle, mommy to 8 year old boys! 

My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement

sbgrace is offline  
Sponsored Links
Advertisement
 
Old 07-07-2010, 03:52 AM
 
starlein26's Avatar
 
Join Date: Apr 2004
Posts: 5,813
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


Those days suck. This is a difficult path to walk...your son is very lucky to have you!

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
starlein26 is offline  
Old 07-07-2010, 07:01 AM
 
BookGoddess's Avatar
 
Join Date: Nov 2005
Location: Gryffindor Tower at Hogwarts
Posts: 6,266
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)


I sometimes find my DD isn't herself during evals. It's almost like she knows on some level she's being evaluated. More than once I've had to say "but really, she's not like this usually." My mom said I was like that too, and I'm completely NT. I would shut down and not talk at all. That was so different from how I would behave around people at home.

You know he's making progress and you've seen it. Hold onto that. Could some of his behavior be attributed to his age? A lot of kids on the spectrum act younger than their chronological years ( I know you know that..)

Normal is just a setting on your dryer.
BookGoddess is offline  
Old 07-07-2010, 09:57 AM
 
SpottedFoxx's Avatar
 
Join Date: Feb 2010
Location: Philadelphia Area
Posts: 811
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


Oh, I have been there. After a year of intensive speech therapy (and making some huge strides), at our last (and I mean last) developmental pediatrician appointment our doctor said "OMG, he has a very severe articulation disorder - are you doing anything about this?" Yes, we know. Yes, he gets small group speech 2x a week for the past year and 5 day a week speech in his classroom. She then goes on and on about how he needs one on one (first time she ever told us that). Not once, with my sweet boy sitting right there, did she mention how far he has come and give us any positive feedback. We went from understanding him maybe 20-30% of the time to 50-60% of the time. I think that's pretty impressive. We will hopefully have a new developmental pediatrician soon.

Try not to let it get you down. Your son has made huge strides. You aren't imaging things. He was just off that day. Just like some kids (and adults) freeze in a test, I'm sure some freeze up during an eval.

Walking to raise money for Apraxia - feel free to join me if you are in the area or donate http://www.apraxia-kids.org/southjerseywalk/juliefoxx
SpottedFoxx is offline  
Old 07-07-2010, 10:07 AM
 
AnalogWife's Avatar
 
Join Date: Sep 2007
Posts: 933
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


Autism parenting is quite the roller coaster. I've been feeling like my DS has lost strides in the past few days, I think it might be the heat.
AnalogWife is offline  
Old 07-07-2010, 11:31 AM
 
Emmeline II's Avatar
 
Join Date: Feb 2006
Posts: 8,558
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Or you can take your child (who terrorizes his teacher) to the therapist where he sits perfectly still and quiet--AFTER having a major meltdown in the waiting room.

Perhaps you could send a report from his speech therapist to the evaluator?

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
Emmeline II is offline  
Old 07-07-2010, 01:10 PM
 
Kristine233's Avatar
 
Join Date: Jul 2003
Location: Way Northern MN
Posts: 3,973
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Sending along hugs! Be strong mama!

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
Kristine233 is offline  
Old 07-07-2010, 01:14 PM
 
newmothermary's Avatar
 
Join Date: Jan 2007
Location: NYC Baby!
Posts: 840
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hugs Rachelle. I understand.

[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
newmothermary is offline  
Old 07-07-2010, 02:41 PM
 
AndVeeGeeMakes3's Avatar
 
Join Date: Mar 2007
Location: In the Lovely South, Y'all.
Posts: 1,818
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


So sorry. I think we all get kind of used to the day to day sometimes and hear/see our kids in ways that start to seem "normal-ish." And then, WHAMMOOOO!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
AndVeeGeeMakes3 is offline  
Old 07-07-2010, 06:04 PM
 
karenstir7's Avatar
 
Join Date: Jan 2008
Location: Houston
Posts: 50
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
So sorry. I do understand. I was so happy seeing improvement in my 21 month old son-and then we were around other kids his age over the weekend that are verbal...

The only word my son has is "hi" and it sounds more like "haaaah". I'm happy he is trying to wave but it's more like flapping both of his hands. (2 things he has learned over the past few weeks)

I have spent the past 2 days crying and worrying. Then I remind myself that he is sooo happy and cute and sweet and I will do whatever I can to help him have a happy and hopefully independent life.

Big hugs and hang in there!
karenstir7 is offline  
Old 07-07-2010, 06:41 PM
 
KimPM's Avatar
 
Join Date: Nov 2005
Location: Maryland
Posts: 1,631
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by AndVeeGeeMakes3 View Post


So sorry. I think we all get kind of used to the day to day sometimes and hear/see our kids in ways that start to seem "normal-ish." And then, WHAMMOOOO!
and big

We, too, have times where I'm all excited for the progress I perceive, and then soon after that I get the big letdown. I understand.

Kim mama to DS 12/2005, Pepper kitty , and 10/03, 1/05;
KimPM is offline  
Old 07-07-2010, 10:45 PM
 
nayma's Avatar
 
Join Date: Jun 2008
Location: midwest
Posts: 324
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
hugs, rachelle. these kind of days feel so rotten to the core. i agree with the pp, though, that your his mom, and i can guarantee (without knowing you) that what you have seen in him truly exists. one moment certainly doesn't capture me, and i'm sure it didn't capture your son either... that said, having our kids evaluated never feels good- especially when their snapshot doesn't match yours. sorry.
nayma is offline  
Old 07-08-2010, 12:04 AM
 
goobergrl6's Avatar
 
Join Date: Jan 2007
Location: Lexington Park MD
Posts: 236
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I know just how you are feeling. There are those days I just look at William and think how FAR he has come! That maybe one day I will not have to explain him to people, that they can understand him, that they will not look at us in public weird ect ect. Then he has a bad day, or week, or eval and reality comes smacking me back in the face! That yes he has come SOOOOO far and I am SOOOOOO proud of him but damn we still have so far to go. Some days I just have to sit and think really hard about where we were a year ago and imagine just how far we might be in a year to just get me through that day. So big hugs to you mama!

Lisa
goobergrl6 is offline  
Old 07-08-2010, 12:15 AM
 
bonamarq's Avatar
 
Join Date: Oct 2006
Location: Huntington West Virginia
Posts: 209
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hugs to you

In my experience (I work in the field) kids on the spectrum RARELY test well - since they don't do well outside of their normal routines, and being evaluated is not part of their routine this is just bound to be a difficult and inaccurate snap shot - and does your son have a rapport with the evaluator? If not then again it's not going to possibly capture an accurate picture...You know your child better then anyone, try not to let the "official picture" get you down, although I know that's easier said then done....
bonamarq is offline  
Old 07-08-2010, 12:27 AM
 
AnalogWife's Avatar
 
Join Date: Sep 2007
Posts: 933
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by bonamarq View Post
In my experience (I work in the field) kids on the spectrum RARELY test well - since they don't do well outside of their normal routines, and being evaluated is not part of their routine this is just bound to be a difficult and inaccurate snap shot - and does your son have a rapport with the evaluator? If not then again it's not going to possibly capture an accurate picture...You know your child better then anyone, try not to let the "official picture" get you down, although I know that's easier said then done....
Thanks for that, and all the other mamas who've posted, I'm not the OP but I've been feeling WAAAMMOOOOO'd the past few days. I have another thread about DS being medically approved for SSI, and just knowing that other parents of ASD kids have a hard time getting approved but that my DS was approved on the spot, kinda hit me. Then he got a haircut and looks so much older and so less babyish....his delays and "ways" seem so much more obvious, I'm having a hard week. So glad there's other parents who know.
AnalogWife is offline  
Old 07-08-2010, 12:28 AM
 
sncmom's Avatar
 
Join Date: Apr 2009
Location: dreaming of SF
Posts: 112
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Such a bummer. Big hugs to you. I actually refused our most recent developmental assessment b/c I knew it would be depressing and for us, it wouldn't have changed the clinical picture. It is so hard to try to focus on the positive things we see when the official evals try so hard to elaborate on the negative.

Mom to DD1 (Feb 2006) and DD2 (June 2008) with HIE, CP, dev delays and reflux
sncmom is offline  
Old 07-08-2010, 12:08 PM
kme
 
kme's Avatar
 
Join Date: Jan 2009
Posts: 347
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Ugghh... evaluations! I find that my son (SPD, language disorder) rarely performs at his "norm" during evals. In his case, he often performs BETTER because it is one on one and he has great difficulty in groups and when there are a lot of distractions around to interfere with his receptive language. So....I will note all these problems and then the evaluator will actually find DIFFERENT ones and say she isn't seeing the same problems I (and his teachers) are seeing. So I often leave evaluations confused...does he really have the difficulties I am seeing and what is with all these NEW ones?????

Hang in there - your son's strides are real. I often wonder why more evaluators don't go to the kids' normal environments and observe. I think they would get a truer picture of how the child is functioning.

((hugs))
kme is offline  
Old 07-08-2010, 12:43 PM
 
AndVeeGeeMakes3's Avatar
 
Join Date: Mar 2007
Location: In the Lovely South, Y'all.
Posts: 1,818
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
We have unexpected * guests staying with us (for god knows how long) who have a 6 yo. Not only are they able to do all the hyper-crunchy sh*t with him, but he's literally twice the size of VeeGee. It's been difficult seeing her next to him, seeing the developmental gap, not just size. He eats like a horse, and she's sitting there with a tube, while they all "encourage" her to eat her banana pudding.

Last night the kid called her a spoiled brat at the dinner table because she was crying about having to take a bite of pudding. It was a lucky thing that his momma took him from the table . . . .

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
AndVeeGeeMakes3 is offline  
Old 07-08-2010, 12:52 PM
 
fairejour's Avatar
 
Join Date: Apr 2004
Posts: 915
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I hear ya!

We are right in the middle of some HUGE testing for Miss Kat and I am TERRIFIED that it is going to show no progress in the last year. Logically I know she has made progress, but I'm afraid the tests won't show it and somehow the year will have been a waste and maybe she'll never catch up....
fairejour is offline  
Old 07-08-2010, 04:47 PM
 
BookGoddess's Avatar
 
Join Date: Nov 2005
Location: Gryffindor Tower at Hogwarts
Posts: 6,266
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Quote:
Originally Posted by kme View Post
I often wonder why more evaluators don't go to the kids' normal environments and observe. I think they would get a truer picture of how the child is functioning.

((hugs))
Yes! I've often wondered why more evaluators don't go to the child's environment instead of making them come to a new location. About a year ago, we went to a particular evaluator's home (she has a home office), but she kept us waiting for about 20 minutes even though we had a confirmed appointment. DD didn't make a fuss about the wait. She sat on the couch and waited patiently. I was so proud of her. But when the eval started, DD refused to play with the person. I totally understood that DD wasn't in the mood anymore after the long drive to get there then having to wait some more for the evaluator to get ready even though we were the first appointment. The evaluator made this horrible comment to me afterwards, "well if I hadn't seen her before I would have thought she was hopeless." Say what?! I couldn't believe she would say that about my very smart, verbal, funny child... As soon as those words came out of her mouth, I decided that was it. Never going back to her for an eval.

Quote:
Originally Posted by AndVeeGeeMakes3 View Post

Last night the kid called her a spoiled brat at the dinner table because she was crying about having to take a bite of pudding. It was a lucky thing that his momma took him from the table . . . .



I'm glad the mom took him from the setting.

Normal is just a setting on your dryer.
BookGoddess is offline  
Old 07-08-2010, 05:13 PM
 
Emmeline II's Avatar
 
Join Date: Feb 2006
Posts: 8,558
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by kme http://www.mothering.com/discussions...s/viewpost.gif
I often wonder why more evaluators don't go to the kids' normal environments and observe. I think they would get a truer picture of how the child is functioning.
It was a bit weird for me to have the OT come to our house but ds was soon his normal self around her. She got to see ds and dd argue over a toy, one of the rare occasions where they played with Leggos together without fighting, and ds doodled all over her notebook. It doesn't sound like much but I finally feel like I don't have to explain what ds is "really" like; I felt like she saw what we saw.

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
Emmeline II is offline  
Old 07-09-2010, 05:00 AM
 
shelbean91's Avatar
 
Join Date: May 2002
Location: Mesa, AZ
Posts: 9,290
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I know what you mean. Ds1 was dx'd when he was 2 1/2. Ds2 is now 6 and I'm getting him formally eval'd now. I'm pretty sure he'll be dx'd. Fortunately, the appt was 1 1/2 hrs and he was himself - good and bad.

I get upset when I think about the future and how hard it will be - both for me and the kids - and dh just says 'I don't know why you get so upset, he'll be happy and that's all that matters'. it's mostly true, but that doesn't make it any less hard knowing there is a very real possiblity my son will never be able to live independently.

Our kids are our kids and we love them. When we're smacked in the face with how much harder it is for them (and us, sometimes) than others, it hurts and it's hard.

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
shelbean91 is offline  
Old 07-09-2010, 11:34 AM
 
NightOwlwithowlet's Avatar
 
Join Date: Jun 2009
Posts: 335
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
A friend of mine and I just talked about this. Her son "tests well", he has Asperger. One on one with adult in a structured setting, he comes across as a very mature and articulate child. However, with peers and out in the world, he is lost. She constantly has to fight for services, she's had to video tape how he with peers to get the evaluator to acknowledge his difficulties.

DS has the opposite problem. I remember telling his pre K teacher that the evaluator has said, DS had limited imaginary play and she almost fell over laughing. DS has an array of imaginary friends, several on going imaginary scenarios with real friends and a rich inner world. He adapts well to the real world.

We once walked out of an evaluation when DS was 4 and DH said, "They will say ASD again." If ever there was a time DS looked like he had ASD, it was that day. He refused to look at anyone, echoed every thing I said, threw the toys on floor, pooped his pants (something he hadn't done in six months), and leaped around like he was on speed. This was the same kid who attended a typical preschool without an aide and did great.

We've has assessments where he refused to speak to anyone. The last time he was almost seven and he did his best, but he wasn't himself. I bring videos to show he is quite capable.

Lots of hugs, sbgrace, it doesn't change how much progress you know he has made.
NightOwlwithowlet is online now  
Old 07-09-2010, 05:25 PM
 
laurata's Avatar
 
Join Date: Feb 2002
Location: Settling in the Sound
Posts: 1,178
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I can relate! I was rather upset to learn that my son wasn't going to be in an inclusive kindy class next year, he'll be in a k-3 special ed situation. Yet, over and over again, I have therapists, etc who are shocked that he has an autism diagnosis because he 1) chatters and 2) makes great eye contact.

I try to tell myself that there will be good days and bad days, for all of us, and its good to focus on the positive as much as we can. Don't beat yourself up!

Laura, mama to J (15), N (12), E (9) , M (6), and our little caboose, R (3).
laurata is offline  
Old 07-10-2010, 10:51 PM
 
dbsam's Avatar
 
Join Date: Mar 2007
Posts: 2,143
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by kme View Post
I often wonder why more evaluators don't go to the kids' normal environments and observe. I think they would get a truer picture of how the child is functioning.
When my daughter was three she was evaluated by a ped-psychologist. The psych first observed my daughter through one-way glass at her normal toddler group, interviewed me privately, and then went to lunch with my children and myself. She followed-up with an appointment at our home. At the time, I thought this was typical since it was our first eval.

The past month my daughter had a neuro-psych eval at a hospital. I was not allowed to observe so I do not know how she did. I am meeting w/the psychiatrist next week and do not know what to expect. She can be so different one day to the next I really doubt the accuracy of the testing.

Sbgrace, as pp’s mentioned, you know your son has made progress. But I understand why you are down. Some days my daughter seems perfectly fine – typical, and I wonder if I am over-reacting and overanalyzing her behaviors. Then other days, bad days or days when I see her through the eyes of others, I wonder if I am fooling myself.
dbsam is offline  
Old 07-11-2010, 03:43 PM
 
BookGoddess's Avatar
 
Join Date: Nov 2005
Location: Gryffindor Tower at Hogwarts
Posts: 6,266
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
sbgrace - I was thinking about you. How are you?

I've been following the blogs of some RDI moms, and one of them had a son who was in either stage 5 or 6, but they discovered some "holes" in mastering some skills in earlier stages so they had to go back to plugging those holes - and they did. I was just wondering if that could be a possibility.

Normal is just a setting on your dryer.
BookGoddess is offline  
 
User Tag List

Thread Tools


Forum Jump: 

Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off