Stepping away from the heaviness that is parenting an ASD child in a USD ( _ Unified School District) world, my garden has suddenly become a very exciting and satisfying place for me to be. One of the chickens (Rosie) is laying - one egg every other day - and since my husband helped me put up an (12 x 7.5 x 6 ft) enclosure for the "big girls", the rest of the yard is beginning to bounce back. The grass is growing again, the flowers are making a comeback - chickens are wonderful for the soul, but hell on the flower beds.
Thank the FSM for Daiso and Ichiban Kan's super cheap bird netting (@ $1.50 a pop)! I've been able to use the same 9 x 3 ft lengths over and over again; this time to carve out some protected space for a bee-friendly flower garden. I'm hoping that by October I will have some borage growing again.
Bit by bit, I'm ripping out yet another patch of plastic weed blocker and putting down layers of compost, straw, cardboard, & wood chips. These areas have not been netted off; the chickens are specifically invited to dig, scratch & root through all of it This fall, I will be planting cabbage and other shade loving winter vegetables in these spots thanks to the planting bed services of my tiny, omnivorous, feathery dinosaur friends.
Monday, August 29, 2011
Thursday, August 11, 2011
We Need Resources - They Need HELP
This is a really good article on parenting a child on the autistic spectrum.
Our son's ASD is even milder than that of the author's daughter. He is charmingly quirky and easily passes as neurotypical most of the time. He is bright and and more than capable of meeting the academic challenges of the grade he is about to enter even though he has some problems with paying attention. He is verbal, albeit challenged in regards to his capacity for reciprocial conversation and expression of his internal states. He is social and interested in making friends with other children, but has a hard time reading social cues and understanding appropriate behavior. He tells me he loves me several times a day, and is so affectionate that is is a little overwhelming at times. However, finding the internal and external resources that our child needs to thrive is not easy, and sometimes there are moments when we are challenged and pushed to our limits.
The most recent example was two days ago when he lost a magnetic number 7 that he had placed on one of his toys. He could not calm himself. He was not satisfied with another magnetic "7" - it had to be the one he lost. He was screaming and kicking, hysterical to the point of being unable to breathe. I was irritated to the extreme. I was in the middle of a project that I wanted to finish up ASAP. I found myself resentful of both my son and my husband - why is he making such a big deal over a lousy little magnet? Why are you asking me to drop everything to help you find it? Let him cry it out - he isn't always going to be able to find things he lost, he needs to learn how to tolerate disappointment and regulate his own emotions.
Finally I begrudgingly gave in and joined the search. My son was hysterical to the point of being barely able to breathe. He seemed to be beyond understanding the questions I was asking to help him retrace his steps - do you remember when or, where did you last saw it. Finally I found it in the last place I remembered seeing it. Calm was restored, but I could see what the ordeal had cost my son. He was exhausted and needed to lay down and watch a favorite video to regroup. As for my husband and I, there were apologies to make, "I'm sorry that I snapped at you." I'm sorry that I had to interrupt you." "Are you okay?" "Are we okay?"
Our baseline is "contained chaos". Quite a bit of our furniture, bedding, bath and kitchen accessories have been commandeered by our son's to build robots and trains. Our house is an obstacle course at the best of times. Having an orderly & serene home is a distant dream; cleaning is sisyphian task that is undone as soon as it is done. Tasks are frequently interrupted in order to "put out fires"; and as a result, are sometimes impossible to finish. The seeming futility of it all frequently depresses me. Several times I day I find myself muttering, "this is why we can't have nice things." Finding the right educational and therapeutic resources can be a maze of bureaucratic red tape.
That said, we've got it pretty good. Other parents we know, have it much, much harder as we do.
For some, their children are non-verbal and extremely anxious and phobic. Some of their children have toilet training issues. Some of their children have violent tantrums, or require assistance dogs to prevent them from spontaneously running away for no apparent reason. Some of these parents wonder if their child have any emotional connection to them at all, or whether they will ever say, "I love you". For some of these parents, their kids rarely get invited to the birthday parties of neighbors and classmates. For some of these parents it is necessary to retain the services of a lawyer to compel agencies who are supposed to provide their child with resources to do their fricking job.
These parents are trying to keep their family and household functioning and intact with very little in the way of outside help. They feel guilty for neglecting other children and spouses. They try to put on a brave face while inside they are drowning in a sense of hopelessness.
As the writer of the blog post says:
Our son's ASD is even milder than that of the author's daughter. He is charmingly quirky and easily passes as neurotypical most of the time. He is bright and and more than capable of meeting the academic challenges of the grade he is about to enter even though he has some problems with paying attention. He is verbal, albeit challenged in regards to his capacity for reciprocial conversation and expression of his internal states. He is social and interested in making friends with other children, but has a hard time reading social cues and understanding appropriate behavior. He tells me he loves me several times a day, and is so affectionate that is is a little overwhelming at times. However, finding the internal and external resources that our child needs to thrive is not easy, and sometimes there are moments when we are challenged and pushed to our limits.
The most recent example was two days ago when he lost a magnetic number 7 that he had placed on one of his toys. He could not calm himself. He was not satisfied with another magnetic "7" - it had to be the one he lost. He was screaming and kicking, hysterical to the point of being unable to breathe. I was irritated to the extreme. I was in the middle of a project that I wanted to finish up ASAP. I found myself resentful of both my son and my husband - why is he making such a big deal over a lousy little magnet? Why are you asking me to drop everything to help you find it? Let him cry it out - he isn't always going to be able to find things he lost, he needs to learn how to tolerate disappointment and regulate his own emotions.
Finally I begrudgingly gave in and joined the search. My son was hysterical to the point of being barely able to breathe. He seemed to be beyond understanding the questions I was asking to help him retrace his steps - do you remember when or, where did you last saw it. Finally I found it in the last place I remembered seeing it. Calm was restored, but I could see what the ordeal had cost my son. He was exhausted and needed to lay down and watch a favorite video to regroup. As for my husband and I, there were apologies to make, "I'm sorry that I snapped at you." I'm sorry that I had to interrupt you." "Are you okay?" "Are we okay?"
Our baseline is "contained chaos". Quite a bit of our furniture, bedding, bath and kitchen accessories have been commandeered by our son's to build robots and trains. Our house is an obstacle course at the best of times. Having an orderly & serene home is a distant dream; cleaning is sisyphian task that is undone as soon as it is done. Tasks are frequently interrupted in order to "put out fires"; and as a result, are sometimes impossible to finish. The seeming futility of it all frequently depresses me. Several times I day I find myself muttering, "this is why we can't have nice things." Finding the right educational and therapeutic resources can be a maze of bureaucratic red tape.
That said, we've got it pretty good. Other parents we know, have it much, much harder as we do.
For some, their children are non-verbal and extremely anxious and phobic. Some of their children have toilet training issues. Some of their children have violent tantrums, or require assistance dogs to prevent them from spontaneously running away for no apparent reason. Some of these parents wonder if their child have any emotional connection to them at all, or whether they will ever say, "I love you". For some of these parents, their kids rarely get invited to the birthday parties of neighbors and classmates. For some of these parents it is necessary to retain the services of a lawyer to compel agencies who are supposed to provide their child with resources to do their fricking job.
These parents are trying to keep their family and household functioning and intact with very little in the way of outside help. They feel guilty for neglecting other children and spouses. They try to put on a brave face while inside they are drowning in a sense of hopelessness.
As the writer of the blog post says:
"We need compassion, understanding and the tools to teach our girl to fly.
Our neighbors need HELP.
The need it NOW.
They need answers.
They need services for these kids – for themselves. They need a place to turn. They need a strategy – short-term, long-term, the distant future. They need a break.
Too many of them are living under siege."
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