Friday, March 13, 2015

Long Time No Blog

It has been a very long time since I have put an entry on this blog. Mainly because I have been very disheartened with my son's progress. We have tried so many interventions and nothing seems to work for him.

I am so happy for my friends' children that have made so many strides with their Autism Journey. I also am so jealous. My son still does not talk more than an average 1 year old although he is almost 9. He cannot read or write and although he has made progress in areas of sensory and behavior, but cognition is a daily struggle. I wonder if I took a different path would things be different. I just don't know. Is my son just supposed to be as God, however you define him/her/it, has decided he should be? It is very hard to say.

Everyday is a challenge in my home. I want my typical son to be well adjusted, which means despite the challenges we have with B, we have him in sports and after school activities. That means our family is often divided because B can't tolerate sitting around watching his brother do things.

We hardly ever have anyone over because I know that being around B is either uncomfortable for family and friends or they don't take the time to get to know his very sweet spirit.

My friends think that my husband and I are a match made in heaven, but it is very hard to have a successful marriage when your daily life is just making sure that your son is not going to scream for 3 hours out of the day, eat something that is not food in the house, or pee in your bed. We love each other dearly, but it is easy to feel under appreciated in those circumstances.

I guess what I am trying to say is that at this point our life is merely existing for our children. My husband and I laugh because the plan when we bought our house was to move in 5 years. We have lived here for almost 9 years because despite the great salaries we have, the cost of B's interventions over the years do not allow us to live in the lifestyle someone with our incomes should allow.

It is easy to get down in the dumps, but we can only stay there for so long. I try to reflect on what we do have and, that in the darkest of moments, we do have a better life than many. It is not about being better than someone else or having a life that is typical. It is about appreciating what you do have. I need to remind myself of that more.

Thursday, March 28, 2013

Equality for All

I haven't written in a while mostly due to being so busy the last few months. Todd and I remodeled our home and it was something that was much more trying than I thought it would be. Luckily, we came through it and our home, as well as our marriage, is still beautiful (and as of last week 11 years strong). That certainly got me thinking about all of the talk regarding marriage equality this week. I know I usually post about autism and disabilities talk on my blog, but I really think this topic really speaks to the fiber of our society and what it means to be a family. Which is the most important thing to me, my family.

First off, if you say that gay couples shouldn't be married because the bible says so, that is your right to believe, but we can't say that is a reason there should be a law about it because there is a separation between church and state. Religion can't govern our citizens. That is what is great about living in America.

Secondly, just because two women love each other or two men, how is that hurting you? I say that love is love and the more of it the better, because division and hate really hasn't gotten us anywhere has it?

Thirdly, if a person like Jesse James can be allowed to get married FOUR times and Liz Taylor 10+ times, why can't a gay couple get married at least once? What makes a man and a woman's relationship any better than people of the same sex? That is just silly to say that just because you are a man and a woman, you can marry as many times as you want, but if you are a same sex couple you can't.

Finally and most importantly, what does marriage mean? To me it means that as of March 16, 2002, my husband was officially my family. He was not just my best friend and the person that knows me better than anyone else in the world, but legally he was my family. That means if  something horrible was to happen to me, he is able to make decisions on my behalf. In those circumstances, there is no one else I would want to make those types of decisions for me. Unfortunately, for gay couples in certain states, they are limited to doing this for their sick or ailing spouses. They are unable to have custody of their children because they did not birth them. They cannot inherit property without paying taxes. They cannot get the benefits that married couples get by law. It makes me so sad to think that no matter how much someone loves someone else, the government can limit others on who they say is their family legally. That is wrong.

My friend reminded me yesterday that I can't change people's mind by just changing my facebook profile picture, but I thought maybe I could change people's minds by making them think. How would you feel if you someone told you that your partner could not legally be part of your family?

Wednesday, January 9, 2013

Sticks and Stones

I have become a little more sensitive to other people's plights since my son was diagnosed with Autism. Having a child with developmental difficulties really opens your eyes to the ignorance that surrounds us everyday.

When my son was being tested to see if he was Autistic, we were taken aback when the developmental pediatrician asked if our son was "Mentally Retarded." Seriously, a medical doctor used this term. My husband and I asked what she meant by that. She said "low intelligence." We said we weren't really sure because he was only 2 years old, but regardless of her definition that word to me is derogatory. People normally do not use that in a friendly context.

Believe me, I am no angel. My husband frequently tells me I cuss like a sailor (never in front of my kids), but those words are not directed at any demographic. The words that I find horrific are the ones that single people out. I wonder, in this day, how people can use the word "Retarded" so easily but they find it unconscionable to use the "N" word or the "F" word. I can't even bring myself to type any of those words in fear it may hurt someone's feelings.

I feel awful that I used the "R" word regularly when I was a teenager to describe something as stupid. I said it freely and a lot. At the time it wasn't one of the words that people didn't correct you for saying because it was acceptable. However it has been 15 years since I was in highschool and a lot has changed.

I am sensitive to this now because I have actually had the school district tell me that my son has below average intelligence. I take it with a grain of salt because they do not know my son and they have never met my son in person, but could you imagine that from the day your child was born to be labelled with that if your child had Down's Syndrome? Someone has already marked your child to have low intelligence even before they have had a chance to prove themselves.

I know the saying "Sticks and stones may break my bones, but words will never hurt me," but I don't believe that it is true. Words do hurt whether they are directed at you or your child or if you hear them said by someone you thought knew better.