You know, I thought of this text some of the bad night that just passed. No no this is not the text that prevented me from sleeping but it bothered me.
Honestly I do not know more after a night half-awake thinking about it, how to write the text.
writings have the big flaw of being a "communication" in one direction, and can be interpreted in different ways depending on the reader.
I know it is happening here and I try, when they do to rectify this as best I can. Understand that when I write I think the message is clear and ultimately achieved by the various comments that this is not the case. Knowledge
me of the reaction to bring the publication of my last blog post. Reaction of misunderstanding about the message and also a sense of attack, which was criticized far from the goal.
I already said and I repeat, many of the texts here are inspired from my readings, my conversations with other parents, I sometimes receive emails distress or request for help. These texts are not written mainly for myself but for those people who need to feel understood, for the entourage, family and friends, and people interested in the subject.
Some people do not always express their experience was good when they need it. Some parents are in the difficult phase of approach to diagnosis, or obtaining a new diagnosis that yes take a certain isolation.
The text was not written to criticize "everyone" to be clumsy, not to be so "friendly" or comprehensive and it was not written either to blame people for making fun of our "Misfortunes".
The text is not written within the scope of any frustration or a reproach to my family and my relatives.
The text explains the feeling of isolation that comes with a difference. DIFFERENCE. I write that word because it covers more situations. Parents who have lost a baby at birth, a person with a seriously ill child, someone with terminal cancer, parents of disabled children, and even then it's different depending on the physical, mental, neurological, etc. ...
You know, I went to this, and I know that despite all my efforts to better explain, il y sûrement encore place à interprétation et j'en suis désolé. Comme je dis l'écris ne remplace malheureusement pas une conversation directe.
Premièrement, le titre de mon message précédent était fait en fonction d'un sentiment très lourd que j'ai vécu durant mes démarches et le diagnostic de notre garçon, il y a plus de deux ans. C'est une phase qui est très difficile et oui même chez le parent le plus "fort", le plus renseigné. Je me souviens qu'au moment où on a obtenu le diagnostic et qu'on a fait l'annonce à la famille, comment je me suis sentie seule. Là où j'aurais eu personnellement besoin qu'on asks "how are you" (title of my message) and we wonder how we lived it all, instead I saw the sadness in the eyes of people and far too evasive. Yes people do not know if they can address this issue, if it's too difficult, but if you'd like to just tell you a little and you see that this new "difference" is pushing the people against their will, it hurts. Yes it is necessary to say and I do not think an alien on this earth who has been living alone in this phase.
Second, during the diagnosis, there is a certain intolerance and who moves ISOLATION. The fact that intolerance has to learn, quietly, to accept the misfortunes of others. Ah yes, the neighbor who gets up every night for 9 months has the right to complain and say she is tired. Yes she has the right to say "I understand how it must be difficult," but it may be that this point in our journey there is just not able to accept it. It takes time, and as I say these are things that I said not only according to ME but according to what I shared with other parents and I've seen. The mother who has just learned that her child is dying, you think instantly of shock it will you can hear about your headache. Perhaps, at this precise moment that she wanted to tell you that you complain on a full stomach. For protection, and need to work on yourself, many parents isolate themselves during this difficult phase.
Third, there are people clumsy, I forgive easily, but there are malicious people. Do not think that because YOU are empathetic and understanding and supporting that is the case for everyone and yes unfortunately some people feel the need to reduce our common pain, the difficulties of our child. After getting the diagnosis of our children if you knew how many times we hear "let's see, there is nothing there, it's a trisomic bin worse." oh well he looks not so bad "... either family or close alien. Sometimes it is awkward and can easily recognize it and accept it. We know ... the person wanted to be reassuring and do well, but it is not always the case. Some people are unfortunately very poorly cared for and it's sad and yes I would mention it to them.
Finally, if it comes back on the isolation, as I said this is not a criticism, I do not blame the people to isolate people in difference. Je parle d'un phénomène qui se produit malgré tous, malgré la bonne volonté de tous et chacuns.
Vous savez, quand vous allez à un souper entre amis, là je parlerai principalement de jeunes mamans ou même de futures mamans, même si vous ne vous confier pas sur vos bobos de tous les jours, vous appréciez cette chance de pouvoir discuter avec des gens qui vivent les mêmes choses que vous. Vos enfants qui sont au même âge, c'est toujours plus facile de discuter avec la maman dont le bébé a 9 mois et est en crise d'angoisse au même moment que vous, que de discuter avec celle qui l'a vécu il y a plus de 5 ans. Bien sûr que la maman de l'enfant de 5 ans can bring you much, listening and understanding, but nothing beats the chance to chat with the mom of the baby the same age, who saw the same feelings at the same time as you. It's the same thing for moms, my first pregnancy was a high risk pregnancy, enough to be afraid not to carry the baby to term and even lose. When the situation was confirmed I dropped the idea of prenatal classes, because at this point in time (phase) I struggled to be surrounded by mothers for whom things are going well. The isolation in this specific situation is as protection.
As I said at first it's difficult and more time passes the more it begins to be tolerant, oh yes people have the right to live on misfortunes that now seems "little nothings" and this is again able to accept hear and sympathize so all that is most sincere. But it takes time.
Psychologists talk about the process of "acceptance" (I hate that word) of diagnosis as a bereavement. For cons, the different phases of mourning and go back. The parents are walking from one stage to another in spite of themselves and the tests of time. So even if I just explained that Phase the beginning is difficult and it learns slowly, there may be a parent falls after a big test, a regression or other in this phase that reduces isolation.
So I have explained the dinner, meeting friends, and how it's nice to be with people who live the same things. If we brought you tomorrow morning in a meeting of parents of disabled children, is what you would be comfortable to participate in the conversation? Things are told by these parents, even if you're the most understanding person there, you do not live. Perhaps the very fact that this meeting you're listening, sincere, but participation will be difficult because your experience is different. Well that's exactly what I try to explain and I do not see the harm in saying that in a meeting of mothers of children called "normal" parent of a disabled child will be in the "obligation" shut up. Nobody forced him. Nobody told him not to because it was not interesting. It is silent because he saw principalemen just not the same things, so what do you think it adds to the conversation? If you have the right to be uncomfortable in silence, listening, understanding, empathetic through a group of disabled parents, because their discussion on the latest occupational therapy to teach their child to ride a bike and they tell how it is complicated with a child who will watch the clouds instead of looking forward, plus a severe delay in understanding and motor development, although of interest are not what you live. Tell me what is reprehensible to explain that these parents are experiencing the same thing when they are surrounded by parents of "normal" children.
The difference is that the situation I explained above you, you who are in a group of parents of children disabilities is that this situation does présentra rarely see maybe never for some. The reverse situation, the parent ee disabled child in family reunions, school field trips, child care classes at the pool, karate, the parent of a disabled child this happens every day.
It has nothing to do with the willingness of the parent of a disabled child more than the goodwill of the parent of the child's normal, it's simply a fact of life that makes some more or less pleasant outings which leads to meetings that would sometimes avoid, sometimes hurtful comments (intentionally or not, but as I explained above so we can tell the difference between someone who was clumsy and a person who is to belittle what they say).
sharing that you can afford, two-way, the social interraction, the one where you talk with people who are living things similar to yours, it's easy, you find the famous swimming pool during the meetings family, out with friends. For many of us (I try to avoid the generalization) that interraction necessary, one where we would talk with people that we "understand" because we saw the same things, one where we can talk with people who understand the more complicated terms like stimming, echolalia, who can say "oh yes yesterday I experienced a similar event X that you tell me" it must be caused. We can no longer find it in the everyday life in our exits, our family meeting. We must seek, provoke encounters with people who have children like ours is more complicated and less accessible.
I said that even the best friend can fill this void, because it is realistic, the best friend may very well listen, understand as best he can, reassuring, be empathetic, but it can not provide what is missing. The friend did not see the empathic feeling that I may live taking my boy in his arms, realizing that it grows and it will be more complicated. (And believe me it is not written by sadness, depression or discouragement, sometimes only a finding when managing a crisis in the small of 40lbs, which will continue to grow) I'm having the family and the around the most comprehensive in the world to know they do not live these emotions, yes sometimes we feel alone and say it will never really understand.
it here in Cardigan I apologize in advance if I forgot to specify other items that were not quite clear.
Thanks, if you had the courage to read through the explanations above!
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