Debate on acceptance/treatment

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Mary
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Joined: Fri Feb 25, 2005 8:28 am

Postby Mary » Fri Jun 02, 2006 11:19 am

Regarding the subthread about Temple Grandin, there have been some really interesting points raised. When I first read some of her articles, in which she discussed her anxiety and her belief that she IS her work, and also her inability to understand intimate relationships, I remember feeling sad for her. However, I later saw her on several news programs, and she seemed to be a happy person with a strong sense of self. I realized that I was judging her life from MY point of view as a person who's very socially-oriented. I guess we all have "theory of mind" lapses from time to time. My bad. :oops:

Gabesmom
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Postby Gabesmom » Fri Jun 02, 2006 8:14 pm

I just want to post one more clarification on my own feelings about the idea of "acceptance". Of course, there is certainly a continuum, and I can only speak for my own personal understanding. First of all, I want to start off by saying that I am not anti-ABA or anti-intervention. I realize that there is a huge variation between the way that ABA and other approaches are implemented. Many of you have reported remarkably positive experiences, while others have had disappointing and/or potentially damaging experiences. I believe that for any therapy to be truly effective, it must be completely individualized, taking into account the needs, personality, the physical, mental, and emotional limitations of the child as well as respecting the family dynamic. Any therapist with any credentials from any organization must respect the child as a whole person with unique strengths and weaknesses. I would like my son to be educated in the same way I would like my daughter to be educated. My personal belief is that every child has the right to a personalized education that is tailored to his/her specific needs instead of to arbitrarily designed objectives. I realize that this is an impossible hope given the current structure of the school system (No, I am not blaming teachers, I was one myself, as is my husband), but there are some private and public schools that are working toward this goal with great enthusiasm and success. If I feel,at any time, that the needs of my children are not being adequately addressed, or that my children are unhappy in any school situation, I will remove them.

I digress, but my main point is that children have an amazing capacity for growth and development, but simply because a certain educational approach or method is appropriate and successful for some children does not make it appropriate for all. By observing your child, monitoring his reactions to therapies, asking his opinion if he can give it, noticing changes in moods and behaviors, you can get an idea of whether or not an approach is a good fit for your child and for the family. The amount of time your child spends on any type of formal education, I feel very strongly, must be balanced with the time that he spends on normal childhood pursuits (or maybe not so "normal" in our kids' cases), in time with family, or in idle pleasure. I reiterate the point that I have made in the past, childhood is not a race but a journey. Just because our kids have autism does not mean they must run a marathon. We can help them along and encourage them on the way, but the journey ultimately belongs to them. Sometimes the gift of time is the best gift we can give our kids and ourselves.

Finally, acceptance of an individual IMHO does not equal acceptance of any and all behaviors nor does it equate with laissez-faire parenting as some have suggested. It does not mean doing nothing to help your child to improve himself and to gain independence (if this is an attainable goal) It means understanding your child's potential for learning while remaining aware of his/her limitations (which may change over time) It means providing structure or freedom from structure depending upon what is needed. It means becoming a steward of your child's education and development by protecting his dignity and self-worth against all encroachments. It means helping your child conform to societal expectations when he must (i.e.,no murder, robbery, public nudity) and if he is able, but also allowing him to make the choice not to conform when the rights of others are not at stake(i,e, potentially stigmatizing versus disruptive or dangerous behavior). It means protecting and nuturing his spirit, reminding him of his incredible worth, and of your unconditional love. My greatest hope for both of my children is that they lead happy and fulfilling lives, but they must both determine for themselves the meaning of "happy" and "fulfilling". I will do anything in my power to help them get there.
Jennifer, Mother to Anna, 5 (NT), Gabriel, 4, Autistic

merry
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Postby merry » Fri Jun 02, 2006 11:13 pm

I just got the book - Unwritten Rules of Social Relationships - as a gift and am looking forward to reading it soon as it looks really good.

Temple Grandin was supposed to come to Central Maine Technical Collage last summer to a conference, which was free to any parent of a child with autism. The last minute she was ill with a severe ear infection and so she had a telephone conference instead. I decided to attend anyway and was very glad I did. Even by telephone she was fantastic and when she opened up for questions an adult with Aspergers asked some questions and Temple was very positive and open with her and it was extremely touching to see her compassion for this troubled woman.

Not everyone wants to have a huge circle of friends and constantly going "out on the town." Many people with asd's and nt's alike want 1 or 2 good close friends and that's enough. That doesn't mean they must be unhappy or unfulfilled.
Merry mom to A-14 yo boy with autism and type 1 diabetes

Gabesmom
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Postby Gabesmom » Fri Jun 02, 2006 11:18 pm

Not everyone wants to have a huge circle of friends and constantly going "out on the town." Many people with asd's and nt's alike want 1 or 2 good close friends and that's enough. That doesn't mean they must be unhappy or unfulfilled.


Thanks for that statement, Merry. That's exactly the way I feel myself. I am perfectly content with my family and one or two friends.
Jennifer, Mother to Anna, 5 (NT), Gabriel, 4, Autistic

LM
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Postby LM » Sat Jun 03, 2006 8:46 am

I think we all have pretty different views of acceptance.

There was a specific incident for us several months ago where I had one of those moments where I seriously questioned what I was doing with my son and at what cost. Without going into detail, we did not go through with it. I felt at that moment I had a happy loving child who mostly wants nothing more than to be in my arms, so what was I doing? Sure I wanted him to talk, I wanted him to have a "typical" existence. But at that moment I felt I needed to accept the child I have RIGHT NOW. I realized that it was not just a cream or a pill that's going to help my son, but the love and efforts to understand the way my son learns and to keep persevering.

My father used to say you can accomplish anything, as long as you acknowledge and accept your obstacles. For some people it's education, race, poverty, or gender. But if you can accept that those are your obstacles and acknowledge that you're going to have to work a lot harder to reach those goals than those who don't have any obstacles, then you're half way there.

I view my son's autism similarly. I hadn't really accepted the fact that he is autistic and did not sincerely acknowledge that his unique way of learning means he's going to learn things as best as he can at his pace. I got frustrated when he failed or did not acquire skills as easily as his peers. When he didn't make substantial gains we turned to supplements and DAN! doctors when really the problem all along (for us) was we had not accepted the boy we have because we were too busy looking at the boy we would've had if it weren't for autism.

We have employed a number of therapies to help my son, of those, I know for now which he does best with. And I know that for each kid it's different. We will continue to get him appropriate therapies for as long as he needs them. I will never give up hope that my child will one day live an independent life. I think love and acceptance are 2 main ingredients within a number of other therapies/interventions a parent must employ to reach those goals.

As for goals, I take my father's advice, only in smaller steps. Instead of saying Jack WILL be recovered or live independently by age wahtever, I say maybe he'll learn to fill in three new songs in 2 months, or identify the letters in his name in three months. And when those goals have been achieved, we'll set a new ones.

Mary
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Joined: Fri Feb 25, 2005 8:28 am

Postby Mary » Sat Jun 03, 2006 9:42 am

I felt at that moment I had a happy loving child who mostly wants nothing more than to be in my arms, so what was I doing?


Fabulous post, LM. What struck me is that our paths may be different because our children are so different. It was very powerful to me to read the sentence that I quoted from you above. You had a happy loving child who wants to be in your arms! WOW!

I had a violent, aggressive, frustrated, angry child who couldn't stand to be touched. There were self-injurious behaviors. He was trying to communicate the best way he could. I had to do whatever I could (using a risk analysis, of course) to reduce his anger, his frustration and his violence. I owed that to him. We did ABA, we did diet, we did some biomed, we did Floor Time, we did TEACH, we did ST and OT and PT. We were really blessed (or we got lucky, depending on your point of view).

He is very verbal now. He can tell us and his teachers what bothers him, and LOTS of things bother him. He still doesn't like to be touched, but he will tolerate a hug once in a while. He will let me hold his hand when we cross a street. He understands he's different, he's still angrier that most kids, and he often is frustrated by social situations. But the violence, aggression and frustration are much lower that before. He does smile and laugh and seem happy many times! Those are the best moments, when he's smiling. :D

Gabesmom
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Postby Gabesmom » Sat Jun 03, 2006 1:07 pm

Fabulous post, LM. What struck me is that our paths may be different because our children are so different.


Mary, you're right (do you ever get tired of me saying that? :D ), and LM you make a lot of really good points. I was particularly struck by this statement:

When he didn't make substantial gains we turned to supplements and DAN! doctors when really the problem all along (for us) was we had not accepted the boy we have because we were too busy looking at the boy we would've had if it weren't for autism.


I guess that's the thing that I think prevents a lot of people from fully acceptng their child for the unique person that they are. I cannot emphasize enough that I believe that there is a major difference between fully accepting your child and fully accepting his behaviors.. In Mary's situation, I would have done anything necessary to address the aggressive and self-injurious behaviors. Everyone has their own dividing line between what they find acceptable and what they don't. My personal belief is that behaviors that disruptive, dangerous, interfere with health and safety and /or with the rights of other people are always subject to change. Other things, I take on a case by case basis.
Jennifer, Mother to Anna, 5 (NT), Gabriel, 4, Autistic

LM
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Joined: Thu Jan 26, 2006 10:54 pm

Postby LM » Sat Jun 03, 2006 7:20 pm

Mary, you make a great point. My son recently went through a very agressive phase and my tune and plan of action completely changed. I realized that part of his agression stemmed from seeing the power of using his words but realizing he can't always get what he wants. I think while part of helping/accepting your child is being in tune to thier needs and what triggers these episodes, there's the other part of this where you are the same loving tuned in parent you've always been, nothing has changed, and our kids still act out agressively and unexpectedly. I'm not always there to see what triggers a behavior and the fact of the matter is he can't be going around biting and pinching people when he's upset so I understand the need to employ other methods to eliminate a behavior.

Gabesmom, you are much more ahead of the game than I was when my son was first diagnosed, good for you! :)


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