Monday, June 6, 2011

Why I am Thankful for The Coffee Klatch (#tck)


Anyone who follows me knows that I have been a moderator on the support group @TheCoffeeKlatch, aka #tck, since its inception. I had been approached by Marianne, aka @ChildAnxiety, and asked if I would like to provide support for special needs parents on twitter. It was a perfect fit for me as that was exactly what I was doing all on my own. So Marianne created not only a twitter based support group, but a website, a blogtalk radio program complete with iPod downloads and blogging articles. She introduced everyone to some of the most interesting names in the fields of special needs and support in the US and the world actually. In fact one of the more interesting experiences I had during the past two years was the 24-hour worldwide chat-event Communicate to Educate for Autism. We had over 75 guest moderators from every walk of life, every culture and every continent on the planet. It was a wonderful and uplifting experience.

So what gives with this blog post? No, I am not leaving The Coffee Klatch unless Marianne wants to get rid of me. It’s her call and she can give you the boot anytime she thinks anyone is not towing the line. The Coffee Klatch has one major rule-everyone must feel welcome. If anyone -a tweeter, or a moderator- makes people feel unwelcome they are asked to leave. You also check your assumptions at the computer door and do not bring your preconceived notions or prejudices with you. Believe what you want, that is your right, both politics and religion, but don’t bring them to the chat. Do you think it’s a little politically correct? Perhaps, but this way we create a total community of support and care. No one feels that they cannot come because of how they vote, their sexual orientation, their ethnicity or how they pray to God, if they choose to pray at all.

Now this post came about because once again I had a problem with a commenter on one of my blog posts, which had been syndicated on autisable.com. (Yes, I know I am always causing trouble.) It reminded me of why for so long I sat alone when my children were first diagnosed. Now I am not disparaging Autisable by any stretch of the imagination. I think they are a terrific website, bringing together much needed information and allowing the parents who are so heavily involved in autism an open and honest voice. They also donate a portion of their proceeds to autism charities. Also when you write to them they always send you “Blessings”…. Truthfully I don’t think any of us, receive enough “Blessings” daily.

This particular commenter even went so far as to say that unlike my sons, her son is really autistic.  That if collegeman went to college he should be able to take a test without accommodations and that I am generally a self-promoting ignoramus. Ofcourse I didn’t leave it alone, anyone who knows me knows that I wouldn’t dothat. But after my retort I decided that she is quite frankly jealous. Jealous of my children’s functionality and jealous quite frankly of the choices I had made in life, including what we have chosen as our professions, i.e. jealous of our income.

She was terribly insulted because I wanted collegeman to become a lawyer in order to help people rather than a social worker or a teacher. I wanted him to earn a higher monetary living, this is a crime?  With money you get better housing, school districts, clothing, access to medical care, (it shouldn’t be like that but it is and that is not going to change anytime soon) which he will probably need his entire life and he will never qualify for government support, and oh yeah maybe he could have some money left over for fun for himself, too. Why is this so wrong? Sorry folks, but am I missing something that teachers and social workers happen to be overpaid for what they do or paid enough? Does anyone think that in the next decade that that situation is going to change?  I wasn’t disrespecting teachers or social workers, just telling the truth about their incomes. As I have said if it wasn’t for the fact that hubby was a lawyer earning the salary that he does, because the boys fall through all the cracks and we had to pay for most everything ourselves, especially now that they are adults, their lives would be terribly different and not for the better.

In truth the comment was more a pity party for herself rather than anything else. Luckily I have made friends on twitter and facebook who came to my defense, but as they put it, this person was not going to listen. Oh and the truly sad thing is that this hateful jealous parent happens to be a special education teacher. How would you like to be a parent with a mildly effected child being told by this individual that there is nothing wrong with your child? Heavens It makes me shudder to think of the children she may be denying services because they aren’t disabled like her son. She nastily decides that your child is not disabled enough to be considered disabled. WTF and who the hell does she think she is?

I suppose I had such a strong reaction to this comment because it reminded me of a time when collegeman was first diagnosed withPDD-NOS and we moved to our small town in Westchester County. I reached out to some other mothers who had a support group and who lived in my town or near my town. They wanted nothing to do with us as soon as they found out how functional collegeman happened to be. They wouldn’t allow me into their group because my child wasn’t disabled enough. True story. I had never heard of such a thing. How could a child not be disabled enough? What kind of people are these? You can wish that your child didn’t have a disability, I do that every day, but I have never been jealous of or resented the neurotypical or the less disabled child or person. I have only always wondered, why not mine too. Why does my child have to deal with issues that are at times so debilitating and why can’t things be easier for them.

Presently, when my neighbor tells me that her son is spending the summer in France at school to better his French I am not jealous of this child, I am sad for mine that he cannot have the same experience. When my niece studies dance in Europe, I am overjoyed for her, but sad that my children can’t have the same experiences. When my other nieces and nephews talk about their Birthrite Israel trips, I am glad they could go, but sad that even if there is an aspergers support group, neither one of the boys truly could go. Neither boy could do, or will be able to participate in, the  college junior year abroad program (unlike their cousins); quite frankly it was hard enough for them to go on class trips.

I remember when collegeman was in his self-contained kindergarten class and I went for a visit. I walked past a regular ed kindergarten where they were in circle time singing and clapping and laughing. I know I started to cry, not because I resented those children but it hurt that mine could not participate. I have never been jealous of others and what they have, angry at God because of what the boys have to go through yes, but jealous of other humanbeings never. I don’t understand those that are.

Honestly, all those years ago, I decided that I had enough then and there with support groups and other parents. I could not believe that people would be so cruel to wish that your child were more disabled. The jealousy was pervasive. Not only in the support groups that existed but also among those that collegeman ended up with in school.

In fact it just grew and grew as collegeman got older and more functional and was rediagnosed as aspergers syndrome. One of the classically autistic boys that collegeman had been in school with for years would pick on him and even attack him. It became so bad that this same boy attacked HSB and me one day. The parents would do nothing and I am truly convinced they may have felt it was ok. It seems this autistic youngman could drive a car but was not capable of not hitting and attacking my children.

Unfortunately it got so bad, that we literally had to threaten the school district to do something about it. My sweet and gentle husband actually told the district that he was going to call the police and how dare they put us in that position. I never in my life thought I would have to do that. How awful that we as parents, especially parents of children with disabilities, were put in a position that we had to threaten the school with the arrest of an autistic youngman because the district would not protect my children. Well at least that threat had an effect and the district corralled that youngman and watched that he did not go near the boys. I am sorry but as I have said, if your child can attend mainstream school, drive a car and hold some form of job, they know enough not to assault someone. As I have always said too, society needs to find a place for those who are terribly affected and at risk to themselves or others, but that doesn’t mean anyone else’s rights should be impinged. Noone has a right to harm another human being for any reason and if individuals cannot function within these safety parameters, society needs to find a humane and appropriate situation and solution for them to productively live out their lives.

By the way, my children never interacted with this young autistic man; they knew to stay away from him because of the youngman’s anger towards them. In fact when the district tried to get the boys to work it out, collegeman kept asking what he ever did to make the other boy so angry with him. The autistic youngman never answered. I do not know if he could, I just know that his parents never taught him that it was wrong. They did not even try, which I know for a fact because they said he was not capable of learning to not hit my children. Yes, I called and talked to them and constantly asked them to try.

I think it is one thing to be overwhelmed and upset about the hand that your child was dealt but to disparage another person’s pain and suffering no matter how minor you may think it to be, is disrespectful of the other’s humanity. Just because someone has it easier than you do, does not mean you have a right to take from them their civil and human rights. Anyway, this is one of the reason I am so glad to be associated with The Coffee Klatch.

At TCK we go out of our way to make sure that everyone is welcome and that everyone has a voice. No one’s issues are disparaged and noone is turned away if you have a problem. We work together to help people solve their issues and find support and comfort for their children. No one is not disabled enough and no one is too disabled to belong either. It is the beauty of the idea; A safe place for parents to vent, cry and be heard beyond the jealousies and hatefulness of some out there in the larger world. It still never fails to amaze me though, that after all these years and after everything society has had to deal with and the education that has been taking place, that so much hatefulness especially among other parents of special needs children still exists. It hurts my heart.


Until next time,
Elise