Autism: What About The Non Affected Siblings?

By [http://ezinearticles.com/?expert=Val_A_Bruce]Val A Bruce
So many chapters of life with my now eighteen year old autistic daughter Sarah have been about a sort of societal fast or seclusion, engaged upon by myself and my family. This means that engagement with my other two children remained private, in the home. I was not able to be involved in an ongoing fashion in their activities outside of the home. It is kind of hard to explain.
With great frequency I have had to removed myself from a lot of normalcy, so that I might remain along Sarah in order to figure things out; she is just really complicated. My husband and I even opted to maintain two residences for the times when the severity of autism which turned to psychosis was too great. The plan was that my husband Steve would stay in town with my other daughter Jana, and son Jeff; I would go to the farm house to wait the psychosis out with Sarah. That was what our weekends were like over a span of several years. It seemed important to do such. It seemed to be the right thing, in order to give Jana and Jeff something that resembled normalcy; some respite from the extreme highs and lows of Sarah's psychosis. The two champions of Sarah had already persevered so much before her worsening into overt psychosis; at about ten years of age.
I simply was not able to give up on Sarah, so I had relinquished the idea that I would be able to contribute as much as I would have liked, in Jeff and Jana's life. Steve was there for all of us, while also running a small business that usually required ten to twelve hour days in order to keep operational efficiencies optimized, the bread and butter flowing. Steve was there as a father should be and he sometimes tried wearing the mother hat. But hard as we tried, Jeff and Jana developed independence out of necessity; because I wasn't there for them as much as I would have like to have been. A mother's touch was often missing from their lives.
Along with the missing mother's touch, we survived the several years of extreme highs and lows by developing rather stoic personalities. Grandmas and grandpas, aunts and uncles, and long time friends were the ones to deal with the change; our way of participating with celebrations and holidays held so dear became diminished. (We have slowly begun to recover from our lack, since Sarah has begun a trend in improvement. She has always been part of us and we will always be part of her and so we feel her journey in all of its phases.)
During the years of lack when I wasn't there as I should be, I had opportunity to agree with both Jeff and Jana on the subject. I admitted to them that I have not been there for them because the battle we all shared was an impossible one. In the quiet times, we were able to reason that since we faced an impossible battle it was important not to expect perfection from each other; rather accept the earnest attempts at the best that we could do.
I did a lot of praying and my kids always knew this. I told them I did such because I am weak on my own and seemed to fail them at times. When I prayed I usually asked for protection for my kids; and that people and experiences would come their way that were pleasing. My examples in admitting what I could and could not achieve, and in seeking protection in the form of supernatural community involvement, may have seemed lame. It is likely that the example may mean something to Jeff and Jana when they become older.
There did come a day when I was able to watch Jana perform at the Metrodome. She was in high school marching band and it was her senior year. With God's good timing, her sister Sarah started to do well enough for me to feel comfortable with going on a day trip in order to watch and be wowed by Jana.
Watching Jana (percussion) as the marching band performed, and feeling the energy of all the enthusiastic band parents from differing bands was an overwhelming and welcome experience. At times, I had a chip on my shoulder because I was not a part of the band parent scene and didn't know how to explain my lack of involvement. I figured that I was being judged as a mother who doesn't really care. Insecurities aside, at the Metrodome I just wanted Jana to see that I basked in her awesomeness. So, I sat at the fifty yard line as close to "the pit" as I could get. YEAH JANA!
A couple days after the performance I shared the following to one of the band parents:
"As a parent who has not had the involvement in band that the band parents do, I have not had a lot of exposure to practices and performances. I would have to agree that, as I watched Lincoln Band this weekend, I felt it to be a wonderment and a testimony to what community at its best can accomplish. The band, comprised of students with many differing levels in ability, shows what happens when all the differing abilities are brought together via practice, focus, and discipline. The students are given quite a gift when they are provided with the opportunity to be part of the band. The band's success must also be attributed to those who are the active and involved band parents, since those parents offer support for the band directors and assure that all the functions of band are operating at 100 percent. What would we do without all those wonderful band parents? To all the directors and active, supportive band parents; thanks so much for the most positive experiences my daughter has had in high school. I cried as I drove home from my daughters last performance, gratified for the experience my daughter has had by being part of the band."
Yes. I did cry. I have missed a lot in Jana's life and have only hoped that her heart might have a continuing understanding, that sometimes regrets are necessary ones; even as it doesn't make them hurt any less. With all that she has endured I consider the band community and experience has both protected and enriched Jana. The dramatic Sarah would say that band, "Saved Jana's life!" - just as band did for me when I was in high school and walked uphill both ways to early morning band practice!
As an aside, even as I daily consider my lack I revel in a lot of little things. Jana is a lot like me. One time when we were on an errand, we were discussing weekend plans and how we might be able to do something together once Sarah was asleep. In unison - she said, "When I am with you I feel like I am with myself", while I was saying, "Being with you is like me in stereo". We both just looked at each other wide eyed and then laughed. I might not have given her all the time she needed when she was younger, but it was nice that we wanted to be together now.
Jeff is like me too. One day last winter he made the drive out to the farm for a visit and we began to discuss Sarah. At some point in the conversation I alluded to the fact that it looked like Sarah might have a rough winter because I saw some behaviors intensifying. That in turn decides what type of Christmas we might have. I looked at Jeff and said having a normal Christmas might be out of reach and apologized. The next thing I knew our conversation lead to Jeff stating that he was glad we never placed Sarah in long term care and he never would have been able to get over it if we had done so. I never really knew he felt that way, and knowing so was the best early Christmas present. One I will hold on to for a lifetime.
Valerie Ann Dunham Bruce chronicled her family's experiences in "Hello, Dr. Wells"
Article Source: [http://EzineArticles.com/?Autism:-What-About-The-Non-Affected-Siblings?&id=6629516] Autism: What About The Non Affected Siblings?