Thomas and Emerson had their appointment with our psychologist this past Friday, and they completed different tasks than the ones Emerson I had done during our session. They still played with animals, although there were dinosaurs in this batch (perhaps because I had told Jessica that Emerson really loved dinos?). They put together a train puzzle and Jessica had a suitcase set down in the way and Emerson had to move the suitcase in order to complete the puzzle. I guess that was a sort of problem solving task. There was a book that Jessica said Thom could read to Emerson or that Emerson could look at himself, so Emerson decided he was going to "read" it to Daddy and just told Thom random things based on the pictures in the book. Thom also asked Emerson to duplicate shapes...here's a circle, can you draw a circle? here's a triangle, let's make a triangle, etc. Triangles, squares and anything with a sharp corner are a tad tricky for Emerson, but he did pretty well. And then , just as in my session with Emerson, Thom got up and left and waited for a signal from Jessica to come back in. He said Emerson did an awesome job, did very well with each task and had no problem following directions.
He also said that Jessica told him that was it...we didn't need to go back to see her again.
Come again? She said what????
Yes, you read it correctly...she told him we didn't need to go back. Apparently, she feels that Thom and I are doing very well and don't need further help from her. She commented that we have different styles and approaches when it comes to parenting him, but that it was working. She offered to get us a name of a pediatric OT since we were having difficulty finding one, but that was it. Nothing more. No follow-up. No "Here's what I observed during the two play sessions" or "Here's what we do next" or "These are some tips and techniques you can try at home" or "I'd like to see him in a different setting to see how he interacts with his peers" or "Let me give you a list of contacts to get further help." Nada. Zip. Zilch. Big Fat Zero. Sayonara and good luck.
Nice.
That doesn't work for this mama, though. I ranted and raved, and Thom told me that Jessica knows what she's doing and if she thought we were doing fine, then we must be. Great, but how could she possibly think it was OK to just cut us loose like that? Wouldn't it be more professional to bring us in, without Emerson, to discuss what she had observed, let us ask questions, give us ideas--after all, she did tell me after my session that she was going to give us some Social Skills exercises to work on at home with him!--tell us what we can expect from the school system, tips for dealing with them, etc? I just couldn't believe that she would say, don't come back...I'll complete the school referral and that's that. During my session with her, I hadn't had time to ask a single question. I was couting on our follow up appointment to cover all of that and then some. How could she deny me that?
Of course, since then, I've learned that this is not uncommon. That the psychologist makes the diagnosis and referral, and we receive help from the educational system or the pediatric OT, if we're seeing one. From what I've heard from various people, the school board is going to be no help at all, so I sure hope we find a good OT!
I freak out easily, people. I obsess and I worry and I get stressed and anxious. I need knowledge...it's what I live for! I need to learn as much as I can in the shortest amount of time conceivable. I need someone to tell me exactly what's going on, exactly what to expect, exactly what to look out for. I need to know that I have somewhere to turn, someone to go to when I have questions. I need suggestions for books to read that will help, websites to peruse, organizations to contact. I cannot handle being told, "You're done! No need to return!" as if this is good news. To me, it's not. To me, this is a brush off. This does not reassure me. It does not give me confidence in her assessment (might she have been wrong? I think this is in the back of every parents' mind after The Diagnosis).
So, how did I handle it? I calmly wrote her an e-mail telling her I was confused and concerned; letting her know that I still had questions, that I still needed direction. Of course, what I wanted to write was a whole string of complaints with the occasional expletive thrown in for good measure. Hey...I tend toward the hot-headed side of things and often speak without thinking, later regretting what I say--or at least I regret making it public instead of keeping it to myself--so the fact that I kept my cool really impresses me.
**************
Jessica called this morning, apologizing profusely, and told me I was right--she should have scheduled a follow-up meeting for me and Thom. She also told me that when Thom came in and they talked, he said our only concern was getting him into a good school that would fit him. I told her that Thom is still in denial, in some ways, and didn't see a lot of the problems with Emerson since I drop off and pick up from daycare, talk to his instructors there, was the one to deal with Sts Peter & Paul during that fiasco, and did the bedtime routine with him since Thom goes to bed before Emerson does. I see and know much more about what's going on than he does, and I think he tends to overlook some things and still chalks them up to Emerson being energetic or--and this is his favorite excuse to use--older than his years. I, on the other hand, have picked up that a lot of this same behavior fits criteria and descriptions I've read about in regards to ASD and SPD and his behavior doesn't really fit into the descriptions of other kids his age when I talk to parents.
We went ahead and scheduled our follow-up meeting...just me and Jessica. I'll prepare a list of questions and concerns and she will get everything ready for me to look over and have some ideas prepared for things we can start working on at home. She was also in the process of filling out the school referral form (after having to call the school board 3 times to get one sent to her), and claims that she will stay on top of them to make sure progress is being made.
I feel better now.
On top of that, I had received a fabulous e-mail from Jennifer, my high school friend who works with kids on the spectrum and was initially the one I turned to for suggestions and info. Not only has she reached out to me again with words of support and comfort, she has also offered to go way above and beyond what I ever would have expected or hoped for. Notes from presentations at a recent Autism Workshop she helped organize, offers to put together and send me materials to help him with his social skills, questioning what main issues we are dealing with so she can put together more info for us, an offer to SKYPE at some point so she can meet Emerson and we can talk more easily, and even the suggestion to let her know the next time we fly up so she can make a point of hooking up with us. The woman is just awesome! How many people do you know that would go out of the way like this? I'm tellin' ya...her karma level is way up there! :) Thank you, Jennifer. It makes things so much easier for me to know I have you in our lives. I wish we lived closer so we could just bring Emerson to you or to people you have connections with!
And thanks to those of you who have sent me words of support and encouragement, and the few who have shared a little of their own stories with me. It's nice to know...and not just know but really KNOW...that we're not alone in any of this. Love each and every one of you!
No comments:
Post a Comment