Thursday, January 12, 2006

the agony and the agony....

Unlike the first year, when we were just trying to find a way to make life livable, for the past year all the ABA therapy, speech therapy, and social skills building opportunities we have been working on with the girls was persued in hopes of being able to enroll them in public school in '06 for kindergarten. With mom all set to help us, we even had our house on the market and were ready to move to the appropriate school district. In November, the people who have worked the most with the girls and in whom we trust to give us good guidance concurred (independently) that they would really be best served in a private school setting. I was disappointed. We hoped to rely on a public school from kinde-middle school so we could begin re-stocking the coffers because we are on the brink of ruin after shelling out so much dough to help them overcome their autism. Our thinking was that it was likely inevitable that there would come a time for them to need private school for high school and possibly middle school, when the social demands might compromise their ability to succeed academically. Plus, it just felt like a defeat after all our hard work not to really meet the goal we had set out upon. We have swallowed this minor diversion and have set about looking for the perfect little school for them and we found one. It is exactly the kind of school I would want them to attend, regardless of their differences: excellent academics, Biblical instruction, highly structured, etc., but the reason I really think it is perfect for who they are is that the curriculum and atmosphere of the school is very character-driven. The emphasis placed on developing the Fruits of the Spirit is equal to the emphasis on academics. The school has high expectations of its teachers, students, and the parents to reinforce a code of behavior that reflects Christ's teachings about love and what the character of a Christian should be. My girls especially need an atmosphere like that, each of them for slightly different reasons. Emma Jean is a real social bee. Inept as she may be, she desires interaction and thrives upon it. She is also an attention junkie. These two things can be great motivators but there are drawbacks too because of the way her Asperger's manifests. One way she wears her disorder is that because she is unsure of how to act a lot of the time yet is a quick study of the people around her, she will find someone who she sees as being successful with others and emulate them. Sounds harmless I realize, but she takes it to a whole other level. She virtually assumes their persona: mannerisms, accent, everything. It is kind of freaky to observe. I could always tell which therapist she had worked with by her accent and manner when she came home. If she had worked with one, she might have adopted a New York accent and because I was familiar with all their therapists at BI, I could recognize them in her gestures and how she played. It happens fast too. She only has to be exposed to a person for a short period of time. There was a boy who was really troubled that we overlapped OT and ST with and after being around him the first time for maybe 15 minutes in the waiting room it took days for me to undo the "Elijah (his name)" that she had latched onto. That's the real rub. It would be one thing if she was attracted to the most wonderful kid in the room, but because of her personality, sunny and a little rambunctious, and her need for attention, she is drawn to the rowdiest most outlandishly behaved kid in the room. We have to be very careful who she is around. We have to pick her peers and playdates with a great deal of care because disorderly playmates reap havoc and in a big way that inteferes with the neat child she truly is and undermines her behavioral progress. I'm sure ya'll can see what the implications could be if she were in a crowded classroom where order and good manners and kind-spiritedness were not required. It would be chaos for her externally and internally. She is very smart, her IQ is somewhere in the range of 'exceptionally gifted.' But we all know that it doesn't matter how smart someone is if they cannot get along or are removed from the classroom for disorderliness. To further complicate matters she is a perfectionist and seeks approval from her teachers, but because of her social deficits, she doesn't 'get' that what she is doing is not okay until well after the fact, and then she is crushed and it is difficult to get anything out of her afterwards. Unfortunately, again because of her social deficits, she really doesn't learn from her mistakes in judgement. Her impulsivity related to her ADHD makes it a tricky area to navigate. She has to learn from her mistakes and like everyone else, natural consequences make excellent teachers, but she needs a lot of patience and tenacity on the part of the adults who are monitoring the learning experience, if that makes sense. One good thing about her though, while it may take a lot more somewhat contrived and black and white circumstances for her to learn a social lesson, once learned her perfectionism kicks in and she doesn't seem to revist the once problematic area again. Now Abby, she is totally different, but also needs a very closely monitored enviornment. She would never be attracted to a rowdy kid getting into trouble. She is SO, totally rules governed that the last thing she would want to participate in is something that is 'wrong,' be it according to the rules of the classroom or her own, often arbitrary set of rules. That said, she is not as naturally sunny and likable. She is kind of a crumungeon. We joke that she is like a cranky little old man in a five year old girl's body. She likes to do well and she is smart too, well above average, thank goodness since autism is more often paired with MR than not. And she does well, most of the time. Until she suddenly doesn't. Then it is bad news. Her understanding of what makes the social world tick is more limited than Emma Jean's and her social interractions are unsuccessful a lot of the time. She is not always aware of it, which I think is a bit of a blessing sometimes. But she has keen sense of injustice and is very aware of when she is being excluded or made fun of, sometimes she perceives injustice where there has been none and she really gets mad or emotional and it is difficult and takes quite a bit of finessing to talk her down. Then she holds a grudge and that is no fun and not a personality trait that bodes well for her social future. Silliness is confusing to her as are a number of the ways that typical little kids act. Her language and prosody (manner of speak) can be stilted and hard to understand at times and her peer group is becoming aware of that and loses interest in interacting with someone who is unintelligble and whose manner is kind of stiff and unnatural. So Abby needs to be in a classroom where there truly is a zero-tolerance for bullying and the children are held to a high level of expectation when it comes to kindess and grace. I am crying now picturing recent interractions on the neighborhood playground. It is so hard to watch and there is little to nothing I can do even when I am there to compensate or help her navigate these social pitfalls where she is so plainly deficit. I can't bear to think of turning her loose in a schoolroom where kids can be cruel, unknowingly often times at this age. But I realize I have to, God it is so hard and heartbreaking. She doesn't always show that she is aware of these rejections, but she does have real feelings and falls apart, breaking down in tears because she "Doesn't have any friends and never will!" I am helpless because it impossible to teach her the understood and unspoken rules of kid-dom. We try, don't get me wrong. We are relentless in our social instruction, but it doesnt really seem to take. Again, this is all part of Autism Spectrum Disorders, possibly the most crippling part as they mature. Despite all these obstacles, my girls are really awesome little people. And it's not just parental bias that says so. Really! Everyone who has worked with them agrees that they are too smart, too high-functioning, and have too much to offer to be pigeon-holed by the labels of their disorders. For the most part, their dx's do not define who they are and don't interfere with them being typical and bright children. Unfortunately, there are ill-informed stereotypes of the disorders out there that tend to dominate how people think about people with ASD. Before I learned otherwise, if someone said, "autism" I thought of Rain Man or some made for TV movie I saw on Lifetime once with a kid humming and rocking in the corner, flailing about every once in awhile. And while yes, ASD does look like that on some people, it certainly doesn't look like that on my girls. In fact, if I didn't tell you about them and you met them and spent a short period of time with them, you would likely never think a thing was wrong with them, unless you are sensitive to spectrum disorders. But even when I was looking for preschools for them last year, I had so many doors closed in my face the minute the "A" word was spoken. "Good Christian folks" would deny us access to their little pre-school program because, "we are not eqipped to deal with special needs." It was a real eye-opening experience. I began to see why many parents decide not to reveal their children's dx.

Anyway, I realize this is very long. I am just trying to work it all out. The conundrum that I face is this:Do we tell them? It goes against every fiber in my body not to be forthcoming about their dx's. It feels dishonest. However, we have been advised by many other parents and even their therapists not to reveal the full nature of their disorder. To maybe offer speech delay and play up the twin factor since it is widely accepted that twins often have speech and language delays. I don't know. It feels really hypocritical to seek a school because of it's emphasis and accountability regarding matters of character and then not disclose fully a significant fact about my girls.To further complicate this decision, this perfect little school is very expensive. But I know that they are also very generous with finacial aid. When we apply for it, they will look at our records and naturally ask, "Why do you need this aid? If having your children attend a school like this is so important to you, why haven't you planned for it? Why don't you have any savings? Why are you in debt?" Explaining why would require us to reveal their dx's. How else can we tell them that getting the girls to the point that attending any kind of school has cost us everything and then some?I know this is terribly long-winded. I appreciate anyone who has managed to wade through this lengthy post. I am thankful that I had a place to type it all out and work through the mish-mash of thoughts and feelings I have on the matter. This is my first attempt to do so. Thank you for bearing with me. If anyone has any insights or thoughts or suggestions about what we should do, please share them and be frank. I have to submit the first part of the application process next week. We will attend an open house on Tuesday and if the first applications are accepted, then we will go to round two which will include interviews for all of us. The enrollment deadline for September 2006 is next month. I am so anxious. Any input will be very much appreciated.
And of course, prayer, prayer, prayer.

Thank you.

“but the worries of this life, the deceitfulness of wealth and the desires for other things come in and choke the word, making it unfruitful.” Mark 4:19-20 NIV


Anonymous Anonymous said...

Definitely tell them.
That feeling of dishonesty is probably the promptings of the Holy Spirit.
Anyway,The Lord has control over the roll of the dice and the heart of the king.
That's from proverbs. Can't remember where.
Paul says ,"He can do more than we could ask or imagine."
Anyway, when they see how smart the s are I think they will be willing to chance it.

10:29:00 PM  

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