But sometimes it's hard. I find it hard at the end of Winter when Spring feels like it will never come and I am sleep deprived and overwhelmed by managing mine and Ellie's life. Three doctor's visits this week and a Baker's Cyst behind me knee are not helping...
I can also chose to learn from my anger and the difficult things that happen in life. I take that path just as much, probably more considering the big picture. Decide for yourself in reading my blog. I have been angry about Ellie's computer teacher making her use a head switch. If Ellie didn't have such great use of her hands I would be all for it. But head switch? On Ellie? Come on!!! Ellie's head is the most difficult part of her body that she tries to control. When, oh when are you going to see my kid as she is, not as you would like her to be?
Sigh. See that? Up there is me giving in to anger.
Ann has reminded me that there are always two sides to every situation. I am not sure how to learn from this situation yet or what the other side is of Ellie's hands being totally written off and her being made to use a head switch. But I am going to start to look for it and try to understand as I have been but without the anger. Any suggestions from any readers will be appreciated.
It's good to be reminded that everyone makes mistakes, not meaning to, and without malice and that they deserve compassion too. If everyone thought like Ann seems to, the world would be so much a better place. Thanks for setting such a great example of this principle in your post here!
10 comments:
Maybe you can visit and observe the class on occasion to make sure that the teachers and aids are using Ellie's abilities to her best advantage. I had to do this for my boys a few times when there were problems. The teachers too often look for the most expedient solutions for themselves. As Ellie gets older, she will be able to assert herself and make corrections to set ups that are not the best for her but for now you have to be her role model, pointing out better ways to do things.
You and Ellie are going to run into this a lot. We all do, but when a child cannot be bundled in with everyone else in the way things are done, the best way to treat the exception is not always apparent or even wanted by others.
Kathryn,
I so understand your pain and frustration. I learned, after many angry moments, to have faith and trust, (at least to try to) in the so-called professionals. I wouldn't always agree, but would agree to "try it". That being said, I let them know I didn't see it working, and if it didn't work, it would be changed. Sometimes I won and sometimes they came upon something that worked better!! My advise to all parents of special needs kids (and typical kids and husbands too!!) has always been to say what you mean, mean what you say and don't say it mean. I had to learn to get my anger and frustration out some ohter way, as, for me, I needed to be on good terms with those working with my son. I have never been real good with words (I like numbers better), so this was a hard lesson to learn. Finally I started journaling and REALLY praying and this helped me tremendously.
I still have to take this advise to heart, as Matt would not have spent the day in Boston last Sunday if I had my way!!! Only after prayer and help from my husband and my women's group did I realize he was doing EXCATELY what I have always wanted for him, being an independent, confident adult. Just, not on my terms.
I have rambled on, but as I try to help you, it helps me too!! Matt is 28 and I am still learning!!
Thanks for this blog. I love getting to know you and Ellie and I am never to old to learn what life is about!!
Sue
Catherine, I have observed twice and was unable to engage the teacher in any sort of meaningful dialog and received a somewhat blank look and silence. I do need to observe again but am working with Ellie on the side on this to get some evidence for what I am advocating for her. I think you are so right about the way experts deal with the exceptions to the rule and I hope you are right about Ellie being able to advocate for herself one day. I really do!
Sue -you're so NOT rambling. I love hearing from parents who are on the other side of childhood with their kid.
I love that: mean what you say, say what you mean, and don't say it mean. I totally agree with that. Totally and you make a GREAT point about keeping good relationships with those working with your kid. I agree but sometimes it's harder than not. There have been times when I have risked that relationship to get Ellie out of bad situations and in that case it was worth it. But there is never any reason to be mean. The problem is that in some cases just disagreeing makes people dislike you. Can't win em all over I guess. This blog is my journal and I also have a written journal for all the stuff I can't say here! It's great that you are in a woman's group and pray. I contemplate and find that when I get lazy and don't do that enough I lose perspective. Having the support of other moms in my situation has been the most helpful of all.
I am really happy to have met you! I hope I can meet you in person one day when I am in your neck of the woods. Matt too!
For me it isn't a matter of avoiding anger, but of finding the right tool for the job that is at hand. To me anger is a protective and motivating emotion. It (just anger, not rage) sets me on the road to changing things, motivates me to do the work to make things better. Making things better includes steps like thorough analysis: WHY do they think this is a good way to do things? The answer determines the strategies. And sometimes expressing anger can be a strategic approach--sometimes (but only sometimes) the problem really IS a nail and a hammer IS the answer. Personally, I don't resolve to never use a hammer, I do resolve not to use it to fix windows.
Hi. I really appreciate what you have to say here. I think anger has a rightful place in the range of emotions you feel when you have a child with special needs. My anger sometimes fuels my determination to get things done for my Max. I also feel that I have much latent anger over what happened to him, and that is something I will have to deal with over the years.
Kathryn,
While the person may or may not be trying to accomplish this, sometimes when we are forced (i think that is the appropriate word here...) to use a technique that is not our first choice, the area we are forced to use improves. Maybe Ellie will get some increased head control in other ways besides just using the switch. I think she will adapt before this so called teacher adapts to listening to what the individual needs of her students are and how they may best learn something, if she/he could do that they would become an excellent communicator and teacher. Good luck with it all and with dealing with the endless frustrations. It's hard to be the advocate for what's best for your child when you are dealing with people who are perhaps just trying to apply a general rule to the masses... Ellie certainly picked the right mom for the job.... Rick
Terri, Ellen, and Rick - thank you all for your VERY insightful comments. I hadn't thought of a lot of things all of you have said here. It really helps. Sometimes I get mad at myself for having anger. It's been something I have struggled with all my life. But it can motivate to action and it can be expressed without being mean and without breaking windows. Great analogy there Terri! I had also not considered that though the head switch will probably not be anything of use for the long run - it may indeed make Ellie more aware of her head movements! Which would be great.
Thanks to all.
Keep at it, Kathryn. The way you are raising Ellie, I am optimistic that she will advocate for herself and others. Many changes in the world of the disable, and today's little ones will be tomorrow's activists. You are doing all of the right things to put her in the position of feeling that she has certain rights and demanding them when necessary.
In Chinese medicine, the springtime is the season of anger. This is the time of year when all of the small things that have been germinating in the dark push upward and outward. Bursting out of seed coats, pushing up out of the earth, growing up like a weed - all these things take a tremendous amount of energy - the energy of anger. It is our healthy anger that gives us the strength to push out of our own limiting seed coats and to burst up out of the dark ground. Every emotion has its unbalanced side, but I think women in our culture tend to suppress healthy anger because anger might make us look NOT NICE. (Men seem to be okay with anger, but can't do grief ... but that's another element). I think the key with anger is to ask "what do I want here?" Knowing this gives direction to the healthy upward growth. Now if I can just practice what I preach!
Julie - as always, I love your perspective and wisdom. I guess accepting and forgiving ourselves for anger is the best approach. It has catalyzed me into action when nothing else would. Thank you thank you!
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