Feeling conflicted about getting an ASD assessment - Page 2 - Mothering Forums

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Old 04-17-2012, 05:02 AM - Thread Starter
 
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I just wanted to say, first off, that I am so grateful to have all of you lovely mamas hear to talk to. You're all such amazing support. Thank you.

AbbyGrant, what books would you recommened?

So, in a moment of frustration (and confidence!) I called the Ped's office to complain about having not recieved an adequate referral to continue the assessment. And now we're getting the referral! Woot! He still doesn't think DS is on the spectrum, and we'll likely still go to the other Ped, but at least in the mean time we can continue the assessment with the Psych and Speechie.
 

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Old 04-17-2012, 05:10 AM - Thread Starter
 
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I've also been meaning to ask this for a while. DS is very different with me than he is with everyone else. The only other exception, is if he sees another person on a daily basis. But basically with me, he communicates well. He very engaging. Makes great eye contact. Asks questions, responds to my questions. But with other people, he rarely talks, looks at or communicates in any way, unless involved in an area of interest (playing with trains etc) For example, we went to breakfast with my Mum, Dad and Sister. He knows all of them, but doesn't see them all that frequently. He didn't engage with any of them over the entire morning. He wouldn't look at them when they spoke to him. No hello/goodbye. Nothing.


Does this mean he does or does not have a problem with communication/reciprocity?

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Old 04-17-2012, 05:38 AM
 
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Originally Posted by Eloisa View Post

 

He didn't engage with any of them over the entire morning. He wouldn't look at them when they spoke to him. No hello/goodbye. Nothing.


Does this mean he does or does not have a problem with communication/reciprocity?


yes.

 

The question with this stuff isn't so much whether or not the child ever displays a behavior, but how they generally compare to their peers in terms of development. It's really fabulous that he interacts with a few people, including you, that he knows well. But it is a sign that he is completely uninterested in others even when they are interested in him and spending time with him.

 


but everything has pros and cons  shrug.gif

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Old 04-17-2012, 02:03 PM
 
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Coming out of lurkdom on this board because your son sounds SO similar to mine, and because we finally had our first, mostly positive, visit with a developmental ped today.

 

DS is 27 months and I have had concerns from the very first day. Some of those have eased somewhat, and others have crept in. At this point it’s mainly eye contact, restricted interests, pronoun reversal, anxiety around people he doesn’t know well, and a greater focus on objects than people. We don’t have a lot of sensory issues although a few minor ones have come briefly and then gone. He’s also charming, bright, very verbal, can be engaging, and mostly quite content (especially for 2).

 

At our appointment this morning (almost 2 hours) the doc validated my concerns, described him as “a very interesting guy” with a mix of concerning and reassuring behaviors, and referred us to an OT program. We will also continue to see her. No dx (nor was I asking for one). All of this felt right to me.

 

If I’ve learned anything on this journey so far, it’s that there are far more uncertainties than certainties, that a great deal is NOT KNOWN about what is or isn’t going on with kids who may or may not be hovering near the spectrum or other issues, and that support is essential. They are our kids, and we want answers for them, and the answers are not always there when we want them to be, and it’s not because we’re doing something wrong. Thank you to everyone here for helping to teach me these things, and to provide that support J

 

And like yours, my son is also very different with me than with almost everyone else. He has better days and less good days, and I almost canceled the appointment too. And almost everyone I have shared my concerns with has acted like I’m crazy (including our regular ped, whom I otherwise love). And I too feel very alone in this enormous responsibility, like I’m doing things wrong, missing opportunities, or creating problems. It feels like every decision is crucial, and what if I’m making the wrong one?

 

Hugs to you and your son.


 

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Old 04-18-2012, 03:37 AM - Thread Starter
 
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Baltmom, thank you for your reply. It's nice to know I'm not alone feeling this way (although I'm sorry you're having to go through all of this too!) I guess, I just want a bit of direction, you know? A 'where to go from here?;.The appointment with the Ped left me feeling like I'd hit a brick wall.

So! I can't get in to the Speechie and second Ped until July. The Psych doesn't want to do her assessment of DS until around the time the others do theres, although she has booking open next week! I really want to at least see her, in the mean time, to get some thoughts and direction. Does anyone here see any reasons why it wouldn't be a good idea to see the Psych now and Speechie in a couple of months? I'm tired of waiting and having no one to really talk to about it all (in person).

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Old 04-18-2012, 07:19 AM
 
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So! I can't get in to the Speechie and second Ped until July. The Psych doesn't want to do her assessment of DS until around the time the others do theres, although she has booking open next week! I really want to at least see her, in the mean time, to get some thoughts and direction. Does anyone here see any reasons why it wouldn't be a good idea to see the Psych now and Speechie in a couple of months? I'm tired of waiting and having no one to really talk to about it all (in person).


Probably because they won't be evaluating the "same" child--a young child can change a lot in a few months. I would see if she would do the evaluation now and schedule a follow-up for July.

 


"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)."
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Old 04-18-2012, 07:45 AM
 
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I second Emmeline's suggestion. I think the clinicians are so used to the routine of months going by before or between appointments that they don't realize what the in-between times are like for parents, who are wondering if important windows may be closing and wishing for something, anything to support their child. You need someone in your corner NOW. You can also use the opportunity to make sure you feel good about the psych and that she is the right fit.

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Old 04-18-2012, 12:02 PM
 
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Originally Posted by Eloisa View Post

I've also been meaning to ask this for a while. DS is very different with me than he is with everyone else. The only other exception, is if he sees another person on a daily basis. But basically with me, he communicates well. He very engaging. Makes great eye contact. Asks questions, responds to my questions. But with other people, he rarely talks, looks at or communicates in any way, unless involved in an area of interest (playing with trains etc) For example, we went to breakfast with my Mum, Dad and Sister. He knows all of them, but doesn't see them all that frequently. He didn't engage with any of them over the entire morning. He wouldn't look at them when they spoke to him. No hello/goodbye. Nothing.


Does this mean he does or does not have a problem with communication/reciprocity?



We struggled with the "different kid in different settings" issues with our DS (ASD) as well and I believe it's a large part of why he received a diagnoses at a late age.  Our son is very good with me, especially, and also much better with adults than other children.  The more we put him in situations where he had the strain of dealing with other people, and especially other children, the more apparent the social issues became.  One thing that really helped throughout all the evaluations was having teachers, sports leaders, after school care, etc, also provide input for the evaluators.  A good evaluation will often have input from many sources, but that's harder when your child is 4 and spends more time just with family. After the first time our son was evaluated (at age 4) we decided to put him in more social settings to give him practice in social settings and obtain input from other sources.  By the next evaluation (at 5.5) we had a little more to go on.  We didn't come to a definitive diagnoses until last summer at age 11, but simply having awareness from the evaluations of strengths and weaknesses and providing enough range of input to give the professionals a ball park idea of what he needed help with was helpful.  More information is always better to work with than less, even if there are no neat answers.


Busy keeping up with three children and an awful lot of chickens!

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Old 04-18-2012, 08:44 PM
 
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Originally Posted by FarmerBeth View Post

One thing that really helped throughout all the evaluations was having teachers, sports leaders, after school care, etc, also provide input for the evaluators.  A good evaluation will often have input from many sources, but that's harder when your child is 4 and spends more time just with family. After the first time our son was evaluated (at age 4) we decided to put him in more social settings to give him practice in social settings and obtain input from other sources.  By the next evaluation (at 5.5) we had a little more to go on.

 

This is 100%  my experience.

 

Also, and I'm sad to tell you this, but waiting list, long waits and a lack a definitive answers are the norm rather than exception.

 

My DD is now 15, and has had multiple evaluations. Her last was at age 13 and I thought it would be the last one. But she is changing a lot right now and I'm considering getting another one her senior high of high school to help get appropriate accommodations in place for college.  It's not just about the short answer -- PDD-NOS or Aspergers or whatever -- it's about the details the evaluation provides about what is really going.

 

(yes, my DD on the autism spectrum will be going to college. love.gif)


but everything has pros and cons  shrug.gif

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Old 04-30-2012, 03:31 PM
 
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Eloisa, I am new to this and so I may misspeak, for that, I apologize in advance. I think that this is, by nature, a very isolating type of disorder for ASD children and their families. My family has no idea how to react, act or what to say. I don't even know what to say or do yet... but I do know that I will keep pursuing help for my daughter, regardless of what someone else thinks of her condition or behavior. It's very hard, but you can do it!  I am confused, feeling guilty, feeling irritated and feeling frustrated. I guess this is normal.  I felt like, in the last test before they diagnosed her, that they were going to say, you know what... she's fine. You're doing a lot of things wrong as a parent, but she's just fine.  She was having a good day and being really cooperative and sweet during the test, I thought. and so I was really fearful that they were gonna be looking at me like "What are you thinking? This child doesn't have Aspergers... she's fine. You, on the other hand, have issues."   Seriously, that's what was going through my mind during the whole torturous test.  She was fine... I was on pins and needles. Then they called the next day to confirm the official diagnosis of Aspergers. I felt relieved, guilty about being relieved, sad, and worried about the future.  But it was a great relief to know that i wasn't nuts. I wasn't "seeing things" that weren't there, and that there truly was a difference in my child and there was help for her and for us.  Keep reading, keep talking to other parents, find a local support group and GO and just listen and talk to other moms. We've all been there, I'm just starting out, but I'm more than willing to admit I know very little and I'm anxious to meet up with other parents for help and advice.  Even if they act like my child isn't as neurologically different as theirs or whatever. We all have our own strengths and weaknesses and you, as his mom, are going to be one of his greatest strengths, to help him get the help he needs throughout his life!


Mom of 5 working full-time and waiting to go to nursing school! Whew! I need a nap! joy.gif

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Old 05-01-2012, 05:37 AM - Thread Starter
 
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Thank you, FD. Your post was really good for me to read. I really appreciate it.

 

Sorry for being so slow to respond and update. Life keeps getting in the way!

I have been bugging the Ped's office. Calling in case they have had cancelled appointments, trying to get DS in early. And it worked. We're now booked for May 11th. It'll still be another month until we're in with the Psych and Speechie, but I'm so pleased it'll all be over by the end of June.

I'm still terribly nervous. I wish the assessment was more thorough. I'm just not sure they'll really get the whole picture in such a short period of time. But the Psych reassured me that she does put a lot of emphasis of the parents experience.

We'll see. Thank you all for your support.

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