Harri has added night waking, which means crying for attention, to his latest repertoire of unpleasant behaviours. Nothing like sleep deprivation to lead you into a pessimistic head space. Those 2am, 'why me' moments I thought I had left behind.
ASD meets two years old is a tricky combination. His awareness of the world around him seems to develop at a galloping pace. So does his curiousness and simultaneous anxiety about things he cannot control. His language does not match his need to communicate adding to frustration, and although we are supposed to be using a communication board, it just seems to compound his annoyance rather than help. So I confess we don't use it as often as we have been told to. Actually we don't do a lot of what we are told to by our ABA therapist. I'm not sure if we are lazy, fatigued, overwhelmed, ignorant or actually know best, but for the most part we do what works, which is not always what is recommended. I understand the theories behind many of the suggestions, but Harri is not the central point for the rest of us to orbit around. Sometimes we need to take short cuts to create peace for the family as a whole. Sometimes we just have to fill in the missing blanks of his sentence for him, or allow him to request without eye contact, or pick him up when he is whining rather that ignore the impending tantrum. Some days I am on my game and have the internal fortitude to ride out his incessant need for stimulation and attention by demanding he work hard to obtain his wants . Other days I do not. Theories are great until they meet the real world. Particularly a world where parents are in varying stages of grief, fear, anxiety, hopelessness and hopefulness. The idea that parents are the best therapists as they are the most infuential people in their childs life is fine, as long as that idea also incorporates the fact that there will be other children with needs in that family. There will be clothes to wash and put away, floors to vacuum, shopping to do, meals to cook, dishes to clean, homework to see to and if you are lucky maybe some time for yourself. I get that we are working as a team with our therapists, but they go home after 90 minutes.
Therapists are wonderful for the most part, and a great source of knowledge. But they rarely have Autistic children themselves, if any children at all. And could never comprehend the mental and emotional toll of living day to day with a child who requires such intense care. So I admit at times to biting my tongue, nodding meekly at a suggestion while thinking to myself 'pigs might fly'. Do I feel guilty when I don't follow our therapy goals to the letter? You bet I do. But I am in survival mode down here in the trenches.
ASD meets two years old is a tricky combination. His awareness of the world around him seems to develop at a galloping pace. So does his curiousness and simultaneous anxiety about things he cannot control. His language does not match his need to communicate adding to frustration, and although we are supposed to be using a communication board, it just seems to compound his annoyance rather than help. So I confess we don't use it as often as we have been told to. Actually we don't do a lot of what we are told to by our ABA therapist. I'm not sure if we are lazy, fatigued, overwhelmed, ignorant or actually know best, but for the most part we do what works, which is not always what is recommended. I understand the theories behind many of the suggestions, but Harri is not the central point for the rest of us to orbit around. Sometimes we need to take short cuts to create peace for the family as a whole. Sometimes we just have to fill in the missing blanks of his sentence for him, or allow him to request without eye contact, or pick him up when he is whining rather that ignore the impending tantrum. Some days I am on my game and have the internal fortitude to ride out his incessant need for stimulation and attention by demanding he work hard to obtain his wants . Other days I do not. Theories are great until they meet the real world. Particularly a world where parents are in varying stages of grief, fear, anxiety, hopelessness and hopefulness. The idea that parents are the best therapists as they are the most infuential people in their childs life is fine, as long as that idea also incorporates the fact that there will be other children with needs in that family. There will be clothes to wash and put away, floors to vacuum, shopping to do, meals to cook, dishes to clean, homework to see to and if you are lucky maybe some time for yourself. I get that we are working as a team with our therapists, but they go home after 90 minutes.
Therapists are wonderful for the most part, and a great source of knowledge. But they rarely have Autistic children themselves, if any children at all. And could never comprehend the mental and emotional toll of living day to day with a child who requires such intense care. So I admit at times to biting my tongue, nodding meekly at a suggestion while thinking to myself 'pigs might fly'. Do I feel guilty when I don't follow our therapy goals to the letter? You bet I do. But I am in survival mode down here in the trenches.
Hi Sharon,
ReplyDeleteJust wanted to say I'm relieved I'm not the only one. I want to help my son, I really do, but between school and kindy and work, being a wife, taking care of the house, trying to maintain grown up friendships, the therapy ball often gets dropped.
Thanks for sharing.
I hear you! We've had plenty of good suggestions that only work if you're hyper-focused 24/7 and have nothing else going on in your life. Thank goodness for BB's doctor who told me last week "You should always give in to him in public to avoid a scene" and I thought "Yippee! THAT I can do".
ReplyDeleteSee, there are professionals who get it :)
Thanks to you both for your comments. It's a relief to know other mums are struggling with this too. It's easy for me to think I'm not doing enough, and I probably could do more but the result may be counterproductive for all involved.
ReplyDeleteOh wow, tears welled up when I read this. I am so sorry you have been made to feel that way! I mean I sincerely hope no one is actually guilting you about your decisions, I know not being able to realistically follow every helpful suggestion is enough to drive you bonkers.
ReplyDeleteI will offer you my words of comfort- my son attends a little center with a lot of College grad students working under the supervision of certified ABA behavioral therapists. They are very committed to ABA principles and also encourage ignoring problem behavior to eliminate it and expecting certain obedient behavior from my son, but your very examples you mentioned in your post would be areas they often bend for him and other students. They often will scoop up and hold a sobbing child, and often reinforce requests even if a child did not make eye contact. Not because they are lazy- just because sometimes the goal is peace. Without peace at least SOME of the time, how can there be progress? For what it is worth, I think holding your family together should be prioritized above making every situation an ideal learning environment for your son. I think you are doing just fine.
HI secret sunshine, no they have'nt made me feel guilty because I usually dont tell them (sshhh!)
ReplyDeleteI really like your comment.