old, but informative

Someone in Australia is doing research on the families of Autistic children. I thought it was a pretty good survey and it’s kind of nice that for once a research actually gives a shit how family members are affected.

1. How would you describe yourself spiritually? Is it the same way you define yourself religiously? What are your spiritual beliefs and practices? 

I am a Quaker Taoist. The “religion” is Quaker (Friends) because that is the group that best aligns with my beliefs. The spirituality is Taoism – it best describes what I believe. I try to attend meeting for worship at the nearest Quaker meeting house but I only seem to be able to go about once every three or four months. I believe ultimately in balance and subjective relationship with the Unknown. Every human has the light of “God” within and it is their own personal struggle to find that and relate to it however works best for them.

Has your spirituality changed over time? If so, could you please describe how it has changed? What caused or led up to that change? 

It hasn’t changed much per se, so much as it has been refined and closer to my personal life. “discovering” Quakers was the biggest, most important spiritual happenning in my life. Before I knew about Quakers, I did not realize there were ANY people in this world who believed as I do about the personal subjective interpretation of the Unknown. It is the first time in my life I feel free to express my spirituality in the presence of strangers – when I go to meeting for worship – because no matter if they agree with my personal beliefs, my beliefs will be respected.

164 Please tell us how your spiritual outlook helps you understand and cope with your child’s disability. 

Many times I wonder why God is not “there” for me, since recent struggles in my life… always I come back to the realization that I have to be open to receiving what God puts before me. My son is blessed in so many ways and sometimes I feel God works through him to show me the complexity and curiousity of humanity’s endless possibilities.

165 If you can recall, please tell us what you thought your purpose in life was prior to the knowledge of your child’s disability. What do you consider your purpose in life to be now? 

Before I knew of my sons disorder, I believed my purpose in life was to make a positive impact on the world during my time. I believed more specifically that meant being a positive force for change in my environment – I am a former activist for many causes. After my child’s diagnosis I have decided that being an activist means nothing if I am not a positive force for change in my family’s life. I am still an activist, but now the causes I choose mean more to me on a personal level.

166 Many people report occasional ‘peak spiritual experiences’. These are generally moments or episodes in a person’s life in which he or she feels a sense of transcendence, uplifting and inner joy or peace. Indeed, these experiences vary widely. Some people report them to be associated with spiritual or mystical experiences. Others may find such a ‘high’ in watching their child communicate for the first time, watching them overcome challenges, forming new bonds, and other uplifting moments. These experiences have been characterised as ones of wholeness, perfection, completion, aliveness, richness, beauty, uniqueness or insight. Please describe in detail something akin to a peak experience that you have experienced sometime in your life in relation to your child with a disability. Please be specific. We would like to know what happened, who was there, how it felt, what you were thinking, and how (if at all) the experience changed you. 

I was watching my son compete in the local Special Olympics. He was in a swim meet. His division was the bottom level: swimming with assistance and an aide. He was the only child who refused his human aide – he wanted to do it on his own. As a result, he came in dead last but the determination on his face, the effort he put out, the incredible perseverance and the cheering – as I watched him “swim” towards me, I didn’t realize I was screaming and throwing my arms up and laughing with joy because in that moment I saw what awesome capability all people have to accomplish what they want in life. I pulled him out of the water and crying and hugging him I felt the most incredible sense of wonder and humility. I will always remember that moment because I made a concious decision: whatever difficulty life hands me, I will never stop trying. I may need someone standing by my side but I can still go it alone if I have to and sometimes all I need is the cheering on of everyone around me to keep moving towards the goal. I have never been so inspired by anything else like that in my life.

167 A ‘nadir’ is a low point. A nadir experience, then, is the opposite of a peak experience. Please think about your life. Try to remember a specific experience in which you felt a sense of disillusionment and/or despair, in relation to your child with a disability. This would be one of the low points of your life. Even though this memory is undoubtedly an unpleasant one, we would still appreciate very much an attempt to be to be honest and straightforward here and to provide as much detail as you did for the peak experience. Please remember to be specific. 

My ex-in-laws sued me for custody of all three children. I fought against them with the help of several loving people and easily won my case, but part of the procedure was having a guardian ad litem come and review my home and my life. At the trial, we were about to enter negotiations when I was talking to the guardian. I expressed my concern that the ex-in-laws had abused the confidence of my children by talking to them about coming to live with them rather than me. Understandably, this had upset my Autistic son (as well as my youngest) and I had had to deal with his confusion several times. As a result, I wanted their visits with the children to be supervised until I was sure they would not be doing that again. She did not understand at all. She screamed at me (In a courthouse!) about how awful I was to even suggest coming between children and their grandparents. she said to me “would you want to be that kind of mother?!”
At that moment I had a feeling of utter despair. The realization that I would be spending the rest of my life trying futily to explain the difference in dealing with my Autistic son and any other “normal” child. I felt like I would cry for the rest of my life just from frustration. There was obviously no way I could ever make her understand that because he is not like other children, he cannot be treated like other children. I walked away crying and said to my father “you try and do what’s right, you try to educate people, but they still have the power to just reach out and ruin everything you accomplish… what’s the point?” I wondered briefly if I should just give in and let them take my children, even as I knew they could never understand them. I knew they had the money and resouces to make my son go to all kinds of therapy to learn to “act normal” even though I knew that was not the right thing for my son. Why bother? I thought? You can’t keep fighting these people for the rest of his life.
Of course, my father (being a fighter too) understood my feelings were only of the moment. He comforted me and allowed me that nadir. It passed and yes, I did remember my son in that swim meet which helped me go back into the negotiation room and keep fighting.

168 Turning points mark the end of one chapter and the beginning of another. Turning points may be positive or negative. Turning points can take the form of a major life decision, such as choosing an appropriate school for your child, or a major event, such as the realisation of your child’s limitations, or spiritual experiences or ceremonies. Try and think of a turning point in your life in relation to your child with a disability and describe in detail what happened. 

In some ways, I think I have a turning point every time my son does something new – which is probably at least twice a week. Every moment he interracts with me is a wonderful thing and I am always vigilent for every bit of growth I see. I can’t say as I really recall any specific turning points so far. Maybe I have yet to experience one.

169 Try and think of the last time you felt overwhelmed by your child. How did you cope? Did your spiritual beliefs assist you to respond effectively? How? 

Honestly, I haven’t felt overwhelmed by my son (any of them) in a long time. I have felt overwhelmed by situations that concern them. I have felt overwhelmed by dealing with uncaring school officials, ignorant people who try to counsel me, selfish people who try to commandeer my intentions and cruel people who try to manipulate me into doing what THEY think is right. I have always tried to maintain a clear perspective about what is concerning my son and what is really concerning the (non-autistic) world. It is the rest of the world that gives me serious problems… not my son. He can be trying and frustrating – but then so can my other “normal” sons. What overwhelms me most is the constant demands of having to be a “good” mom. I’m expected to do SO much for my boys and yet it becomes unrealistic – if I work myself to death, how will that really help my boys? If I am unhappy, ultimately that is not good for them either. I am very aware of the importance of keeping myself and the rest of the family content in regards to my son’s special needs. He does not always come first in this family. He gets special consideration, but he, nor his disorder, does not rule this family.

170 Has raising your child taught you any life lessons? Please tell us what these are. 

It’s all about priorities. My highest priority is to my family but a family – a true family – is a cohesive unit and should not be labelled by one individual. I determined, after learning of his disorder and educating myself on it as much as possible, that we would move on as a family and try to accomodate him whenever possible. However, HE is also expected to be accomodating as much as he is capable. I have learned that life is much harder than I ever thought it could be as a naiive teenager but the struggle can be amazing in its teaching ability. My son has taught me a lot about patience and fortitude. I think he teaches us all about these things. We have no choice but to learn patience and fortitude and once that realization is faced, it becomes an everyday practice.

171 Please describe to us what you find to be the most challenging aspect of raising your child. 

The most challenging aspect of raising my sons is dealing with a world that does not care about them and does not want them around. Anything that has to do with being in public becomes an exercise in social tolerance. Constantly I deal with ignorant and apathetic influential people. People who I must cajole, entice and nearly bribe or threaten in order to do right by my children. If there were not parents out there sluggging it out with schools and government, Autistics and other disabled children would all still be in insitutions wasting away. I frankly get sick and tired of dealing with ignorant officials sometimes. It is the worst part of raising my children.

172 Please tell us what is the most rewarding aspect of raising your child? 

The constant learning. I am honored to be allowed to watch him grow into a new person every day. I am humbled by his ability to keep trying, despite every obstacle put in his way. I cannot ever stop being awed by his fortitude. I cannot ever stop being humbled by his brothers’ love and assistance. Every time I watch them together, helping each other, learning from each other, even fighting with each other, I am reminded of how it is possible for humanity to grow and love and learn. Nothing will ever equal that lesson.

173 How could your partner better assist you with household duties and duties relating to caring for your child with a disability? 

My partner has been with us about a year now. He absolutely adores all the boys and they love him fervently. Right now, he’s still finding his way with caring for them on a mundane daily level and he’s amazingly good at it. However, having been “down in the trenches” for so long, I’d say his only weakness is not being truly responsible. So many people do not realize that the biggest factor in raising children (ANY children but especially so for disabled kids) is consistancy and responsibility. You HAVE to do what needs to be done no matter how inconveniant it gets for you. He does not quite grasp this I think because these are MY kids and I’ve been here for 13 years – he hasn’t. it isn’t something you can just say “oh this is too hard, I will let you deal with it” all the time, if you want to raise kids (yours or anyone elses) you have to understand that it’s a 24/7 thing that you can’t walk away from when it’s difficult.

174 Which individual, be s/he a family member, friend or acquaintance has been the most helpful or influential in your life that has shed light on your situation? 

My best friend, Alison. She is now the godmother of the boys. She has been so helpful I can’t imagine the last three years of my life without her. It has not ever been a part of her vocabulary to say “I don’t want to” – the notion of giving up has never been allowed around her. Every time I have had a difficulty her response has been “what can WE do to fix this?” I have never met anyone who has so easily proven to me that “togetherness” really means “sticking together no matter what”

175 Who can you talk to about major life issues? Please describe a major life issue that you have discussed with this person/s and tell us how this person/s assisted you. 

Of course I talk to Alison. Even though I love my partner, there are some times and situations that I just don’t feel comfortable trusting him with yet. He is still working on the notion of togetherness to my satisfaction but Alison has never made me doubt her dedication. When I was slapped with the custody suit the first person I called after my partner was Alison. More importantly, when I had my breakdown, it was partly because only she was around and I trusted her enough to “lose it” in front of her. My realization that some people will do whatever they want, even if it means hurting the people you love, that was a harsh moment for me and I couldn’t take it. She held me while I screamed and cried. She washed my face with a cloth. She gently told me that, as much as it hurt my spirit, I had to face the fact that those people were just hurtful and there was no way to understand them. She of all people has been the one to keep me focused on the more important issue; getting what we need to be a good family. Not focusing on ridiculous side-tracks is something she helps me with a lot.

176 Which person in your life is most helpful to you in getting things done? Please describe this individual and tell us in what ways does s/he help you get things done? 

As far as getting things done, there is no one person. I get help from wherever and whoever can give it to me but thus far, no one (besides Alison) has ever been able to help me get “things” done consistantly enough that I’d think of them first and foremost. My partner would come to mind but as I said, he’s only been with us a year so there’s not enough track record for me to say he’s the one.

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