This post is revisiting a topic I have covered several times in different ways since the beginning of this blog in 2005. It seems important to touch on it again because several parents have emailed about their frustration relative to their child’s behavior. A common line is “we are held captive to his behavior” or “it is impossible to plan anything because we never know she will respond”. Many want to know what medications Billy Ray takes or what medications will treat behavior problems with their child.
I am not anti medication but we use the very minimum necessary. I have found over the past 24 years of being Billy Ray’s Mom (he was adopted at 15 months old) that medication is a last resort for behavior issues. What works for us is reading the signs relative to his behavior. Two posts on this topic are Change is Coming – Reading Your Child’s Behavior and Reading Signs in my Complex Son. There are many others under the label Communication by Behavior.
When you allow your child to show you what he needs to feel safe and comfortable and adapt his environment, schedule, etc., etc. as close as possible to his comfort level life becomes much more comfortable for him and for the whole family.
Some have written that it is not fair for one member of the family to have things his way. I do understand that feeling. For me, it came to a point that I learned what Billy Ray can and cannot incorporate or understands. His logics are not mine. If he is confused by an aspect of the routine or environment we can get stuck and ruin a day or even longer periods of time. By doing things the way that he can understand or accept, it changes the flow of whatever we are doing. If that means we have to do things differently than another member of the family wishes but we will not get stuck it might well be worth it, depending on the situation.
Others have written that they don’t have time for the documentation, etc. suggested in Parenting Your Complex Child. My response is that being stuck with meltdowns or behavior issues takes more time than we realize. When we learn to read the signs, adapt to the child’s needs and communicate the child as he or she is to the professionals involved, it changes family life as well as the child’s. It takes time and initially a lot more energy than we might think we can muster but in the end it saves time, energy and frustration. It is really a choice of how you will spend your energy and that of your child and how much frustration you can cope with.
As aside, I am not keeping the blogs up the way I want, slower to answer email and moderate comments because I am getting more email and comments these days. I have decided that is partly my fault because many of the things I would respond is already on the blogs but hard to find because it has been archived by date. I changed the blog template today and am in the process of labeling every old post by categories. If you have any suggestions or comments please let me know.
Until next time,
Peggy Lou Morgan
For a list of my blogs and websites see www.peggyloumorgan.com
Everything Upside Down!
12 years ago
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3 comments:
Peggy: I just bought my daughter who is paraplegic a doll that is in a wheelchair. I read an interesting article, and now I wonder if the doll will make her feel strange. Can you read this and tell me what you think, or make a post about it? I'd really appreciate it! http://www.time.com/time/magazine/article/0,9171,1886457,00.html
It's interesting- as the mom of a 5.5 year old with Asperger's (and even when all we knew was that he was a preemie who screamed around the clock and wasn't reaching most milestones) I have heard a million times about how I "shouldn't cater to his needs" and that it's not healthy to let a child "rule the roost" and frequent mention of what "normal" mothers do with "normal" children (I joke that I don't know but it sounds pretty boring and uneventful :-)
Of course the people that suggested our behavior with our son was abnormal were also the ones that only saw the snapshots of his negative behaviors, and as a new mother (with my own social communication difficulties) I would pretend to tune our the crying when other people were present because if I even picked him up I would get blamed again and frankly I was naive and too exhausted to argue.
Eventually, after our son's pre-k teacher referred us to Easter Seals for an evaluation and we started hearing some neurological buzzwords, and started reading, we found that the tantrums that everyone else suggested were from being spoiled were indicative of other issues and sensitivities.
Once I learned that, I committed to getting down to his level to understand the world. I made notes. I researched. and what happened? Did my boy get more spoiled by my involvement? Not at all- he finally feels comfortable enough to explore his world and catch up in ways we never imagined. He has finally developed the flexibility of thought that gives us flexibility in our lives.
I'm sure the commenting family members feel slighted because the balance that exists in a family with a regularly developing child is thrown off. Certain expected norms of specific roles can't be carried out- but they can't be carried out if the child is having negative behaviors (in our case severe meltdowns to the point of projectile vomiting on occasion) but if those people see effort given on top of the strain that the behaviors can cause (and they fail to see the sometimes slight changes and improvement or misunderstand the process) they get jealous and judgmental.
The only negative part about all of the focus to understand the signs is that some people will see improvements in behavior as a result of now-attentive parenting (which I think gives rise to some of the more hurtful attitudes toward autism and similar disorders).
Yes- learning to read the signs and stocking one's toolboxes with strategies is difficult and time consuming- all consuming as our kids live with this 24/7, and in many ways so do we as we try to help make the world a place where they can shine on their terms. It takes energy but in the long run it makes things easier and more enjoyable and less stressful for everyone. It's like learning a new language- you can take a foreign language in high school and come away knowing how to ask for the restroom, or you can live immersed in in the world of the language (in the country, exchange student, etc) and come away speaking fluently in a comparatively short amount of time.
I also wanted to say THANK YOU! to you, Peggy Lou. I keep referring to Parenting Your Complex Child to help us through some rough patches. Through sharing your experiences you have really tapped into the universality that connects all of us who love a person with complex, special needs. It's a wonderful, empowering volume. Thank you so much! Big hugs!
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