Discouraged - Page 2

[Emmeline II]

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.

[shelbean91]

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.

[NightOwlwithowlet]

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.

[laurata]

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!

[dbsam]

Originally Posted by kme

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.

[BookGoddess]

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.