I just got an e-mail from my daughter asking if I thought she should send this letter to her sisters-in-law. They had an "incident" at one of their homes and one SIL wouldn't let go of my GS so that his mother or father could use calming techniques on him. I think it is an excellent letter and asked her if I could post it here. It may help some of you with talking to your own families or friends.....or just let you know you are not alone! What its Like to Be Us 12-28-11 By Bonnie C Most parents of children with special needs have run into that well-meaning, even loving stranger, that parent acquaintance, that family member or friend who shares their theory of why your child acts as they do. They say things like, Have you considered changing his diet? I read an article (or I had a friend, or my child was behaving that way, and this is what I did.) They talk to their friends and start their sentences with things like, You know, it I had him for a week or two, Id straighten him out or If they would just discipline him They tell you it must be hormones. The comments and conversations often come from a place of love, concern or frustration, people not realizing that you yourself have been in that very place of love, concern and frustration with your child to the millionth power and degree. You yourself do not want to believe you have a child who will always behave this way. You dont want to think you may have to stay by his side maybe for his whole life, helping him navigate social pitfalls and emotional triggers and their attending consequences. And maybe you wont. But maybe you will, you just dont know how the dice will roll. The fact is, my kid lashes out sometimes when he is overwhelmed and the triggers that overwhelm often do not make sense to others. Attention Deficit Hyperactivity Disorder, Anxiety disorder, Peer Relational Difficulties, Sensory Processing Disorder, Nonverbal Learning Disability, Mood Disorder and Pervasive Developmental Disorder as well as Intermittent Explosive Disorder are some of the diagnoses that put him in a category of having special needs, sometimes invisible as they can seem. As others have pointed out in various ways, hitting or kicking or name calling arent special. When people see these behaviors, they resort to all of the above comments and urge us to do something telling us that even if our kid has these diagnoses, he cannot be allowed to hurt others. I agree. My child should not be allowed to hurt others. Ever. And hes not. We dont let him think its the right thing to do, neither by our words or actions. If you ask him, he knows that hurting someone else is never okay. In fact, when he does it, in a fit of lost control and surge of blinding emotion, sensory feedback, and frustration, he usually has huge regret, damaged self esteem, saying things like, Im a bad boy, Im bad, just kill me when we discuss what happened after he has calmed down and is able to take it in. The people who imagine that discipline and taking away privileges for hurting someone in these cases are not seeing the part where he punishes himself the most. There is often more to the picture that they cannot see. And then there are the eerie times when he does something to someone not even realizing that he has done it, or that its inappropriate. You think to yourself, Surely he has to know that isnt right, everyone knows that. But when you talk to him about why he pushed the boy off the platform, there was a logical explanation, spoken without anger or frustration: Because it was his turn and he didnt go. He has an inability to think ahead to the consequences of his actions and to understand the emotions of others. And what makes it harder to understand, sometimes he does know what someone else is feeling, like when he says, Im sorry that happened after I spill my coffee everywhere. But Executive functioning* is impaired. So to those people that have been affected by my sons disability in a negative way, we are truly sorry. All of us. Weve been where you are. Weve been bitten, scratched, called every name there is, punched, spit at, kicked, endured everything that comes out of our son when he has lost control. We know what it feels like, have felt the hurt and rage it induces, the fear for delicate parts of the face, the natural indignation that follows. How dare you do this to me when I provide everything you need and more?? We have also devoted ourselves to learning about what makes him tick, take him to his many therapies, treatments, doctor visits, evaluations, go to parenting groups, have professional support, stay up into the wee hours of the morning discussing what we know or need to do. We decline invitations knowing some events will be too much for all of us to handle. We even have to make painful decisions sometimes about those who dont understand. Should we stop seeing them? Will they ever be able to be with him without judging us all? We spend a lot of time researching how to help him, educating others about his overlapping, often confusing conditions, and above all, supporting him, loving him and teaching him to love, to appreciate life, to be kind and generous to others. Nothing can prepare any of us for this parenthood journey. And sometimes our lives are redefined in ways we never expected. It can be lonely, confusing, heartbreaking. But it can also be strengthening, powerful and tender. I tell my son that Im so glad hes my boy. He is the best boy for me, he is the child who was meant for us, and we will always do our best for him and stand up for him when he cant do it on his own. What we ask of you is to trust us. Trust that if you or your child gets hurt, we are all feeling the right feelings about it. (And chances are, lots of extra feelings, too.) We are working on helping our son gain control of himself. But for him, it has to be painstakingly learned, minute by minute, over and over again. It cant be instantly punished or disciplined away. Every single time is an opportunity for him and for us to use the situation to learn. We talk about and act out what to do next time it happens. And yes, if its a situation in which we know he is likely to erupt, we frontload instructions about what consequence there will be if he has trouble while also teaching him alternatives to the behavior we dont want to see. But some things you just cant prepare for, and in a flash, its happened already. And so we remove him, apologize and leave. And then we continue doing everything else we do, because that is all we can. *The executive functions are a set of processes that all have to do with managing oneself and one's resources in order to achieve a goal. It is an umbrella term for the neurologically-based skills involving mental control and self-regulation.