Saturday, April 02, 2005

hit a rough patch

And I have been reluctant to talk about it too much. I think I am trying to minimze it, hoping that it will all smooth over and life will carry onward and upward, and if I don't give the negative free-rent in my head then it's like it never happened. KWIM?
Anyway, it isn't really going away. Abby has been very difficult for the past month or so now. Every inch of ground won has been so hard fought...that even a little hint of regression is scary and just about paralyzes me.
There was an incident at preschool on Friday and general bizarre behavior the rest of the day/night that have forced me to make some painful realizations. These are things that intellectually, I should have understood all along, but had not internalized them for whatever reason. Grief, I suppose and denial.
1) Abby will never really be "indistinguishable" from her peers. She is different. And as much as I want to, I will not be able to protect her from the challenges she will face on the playground and in the world at large because of her differentness. I am not sad for me. I had to let go about my parenting or myself being judged by how my children behaved or appeared to misbehave. And that was a huge relief to me. The anxiety I carried around! It does however make me sad for her, because I can't compensate for it. Nothing I can do will remediate it. And because she is so HF (High-Functioning), I think that somewhere in her she is aware of it, her difference. But because of her particular disability, she is not now and is unlikely to ever be entirely able to overcome it. And it breaks my heart.
2) We may be able to teach her how to respond with empathy, but I am very doubtful that she will ever really feel most feelings, certainly not in relationship to others. That makes me very sad and a little alienated from her too. I have no idea what "I love you," from her really means or if she really feels it. She can emote because we have taught her how, but it is not natural and sometimes that is more obvious than others. Sometimes it is easily discernable and other times it more of "something is missing, but I can't put my finger on it." A piece that is supposed to be there between mother and child is either missing or mishapen and there is a break in the chain. I am not articulating it well. I feel connected to her sometimes, but there are a lot of times I do not and who knows what she feels.
3) Emma Jean has some pretty serious issues too and much of what I typed in 1) applies to her too, only it is worse for her because she desparately wants to be a part of everything, but just doesn't quite "get it." She misses the mark. However, she feels everything just fine, maybe even too much. She is very tender and very approval oriented. That scares me too.
I know that everything is uncertain for everyone, but it seems like the uncertainty of what the future holds for our girls is so much more so.
I've taken steps to set up a lot more structure for Abby here in the next few weeks. When I assessed the situation and thought about when she was the happiest and the most productive as an individual, I realized that it was when her time was the most rigidly structured. She thrives on structure. She needs it like the rest of us need air. And our days are structured by anyone else's standard, but not so much if compared to her days at BI. Her ability to deal with the world when things are outside of her set of "norms" depends greatly on her ability to depend on predictability within her routine. She is better equipped to deal with curve balls when there has been plenty of continuity prior to what she perceives as a new experience. I have also realized just how sensitive she is to transitions and change. What does not even register as a transition to me, requires a great deal of effort on her part to tolerate.
Anyway, I am working with her ABA therapist and we have a game plan. Thank God for those people at BI. This setback has been discouraging, but not completely earth shattering because I feel pretty confident that she has not really regressed, or lost any skills, but rather that she was unable to keep track of the thread once too many variables had been introduced. I think we can make some modifications and smooth out this rough patch. It was probably even good for me to get a smallish reality check anyway. It's not that I live in a fantasy world or even try to fool myself exactly, but I feel like I have to keep reality at arm's length most of the time or I would be completely overcome by grief and fear. That said though, I need to peek around the blinders occasionally to keep some kind of grip on the real world.
On a totally up note, Emma Jean has made awesome strides since we began ABA with her in January. Pragmatic issues that we have been struggling with for months in Speech Therapy were mastered within weeks of implemeting the ABA programs. :wow: And I think she is really, really smart. Like the genius kind. It will be a big challenge to help her performance match her intellect. She is really a complex little girl, more so than Abby. With Abby, it is pretty cut and dry how best to deal with her, but Emma Jean requires a lot more finesse and really being tuned in to her needs. It has become more apparent to us that Emma Jean definately falls on the spectrum too. Possibly Asperger's or a relatively new classification called NLD (Nonverbal Learning Disorder). I am still in limbo about seeking a formal dx for her at this time. It seems like poor use of our ever-dwindling resources if the main purpose is for me to have a tidy explanation of her challenges. So time shall tell. I have been angling for a free evaluation...trying to use the twin thing to peak some doctor's interest at UT Southwestern/Children's. No takers yet, but I am still hopeful.
So that's it. The ugly truth. Still recovery bound, but a little off track. As with much in life, there are aparently no sure things and no short-cuts to achieving greatness in life on the spectrum.
I want to thank all of you for your unrelenting support and encouragement in the last 15 months. You cannot imagine what a source of endurance you have been for me and consequently my whole family.
Thank you, thank you, thank you.


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