Thursday, December 29, 2011

Dad vs. Man

"Sometimes the poorest man leaves his children the richest inheritance." - Ruth E. Renkel

Being a dad doesn't mean you can’t be a man. When you have a child with special needs, they need their dads to be as involved as possible. Being a dad makes you a BETTER man.

Some men feel that the two are mutually exclusive. Scratch that. Some women feel that way too, so I guess it is some PEOPLE feel that being a dad means you can’t be a man.

Why do I say this? I say this because to me it is almost like there is an opinion out there that a guy has to turn in his “Man Card” in order to be fully vested in their kids. By that I mean that they take part in and are an active participant in ALL of the day to day routines of their kid’s lives that their schedule allows.

It is a disturbing phenomenon that I see firsthand almost every day. In the vast majority of events, therapies and functions that I attend, I am one of the only guys if not the only man in the room. At first I chalked it up to my unusual work schedule; my days off are in the middle of the week which allow me to be really active in Bianca’s week. But I work nights when I do work, so I am able to participate in weekend activities as well… and again, I am in the minority by a LONG shot.

Sunday, December 25, 2011

The Holiday Spectrum

“Traditionalists are pessimists about the future and optimists about the past”
-          Lewis Mumford

Christmas. It conjures up different meanings for different people; some religious, others more secular. Anymore, I just think of crazy people killing each other in stores over really inconsequential material items.

What Christmas almost always means for everybody is tradition. Each year people make a habit of decorating their house the day after Thanksgiving, some families trek to a certain relative’s house that always seems to hold court on Christmas, some families have gift giving traditions. The process of decorating the home is a tradition for most. They break out all the Christmas related trinkets that they have collected throughout the years, most with sentimental value. Ornaments on the tree are usually special for people as well. They were either given by a family member, or maybe they denote a special event in the life of your family… like a birth… or in our case three births. There are midnight church services that families go to in a celebration of their faith. Maybe you are one of the people that have developed a new tradition and pitch a tent for Black Friday specials outside of a store? If so, take some milk with you to pour into your eyes if you go to Wal-Mart,

We take these rituals for granted. When Christmas comes, we execute these traditions as if we are on auto-pilot. We do them, because that is what we have ALWAYS done. To do anything different would seem foreign. They are almost like a reassurance for us that we have survived another year.

Wednesday, December 21, 2011

A Little Perspective Folks

Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.” - Unknown

Somehow I volunteered to be a Room Parent for Bianca’s school. I am not sure how I ended up volunteering. I got a call out of the blue saying that I had signed a form indicating thatI was interested. I have no recollection of signing the form at all. The only thing I can figure is that after another sleepless night, I blindly signed the form while in a walking coma.

 It isn’t a huge responsibility, and I was glad to be able to help. I volunteer to help in recess once a week and I love all the kids in the class and would do anything for them. Being a Room Parent basically requires that you plan a couple of parties: Halloween and Christmas. Pretty easy stuff, but when you have three kids (one with special needs) and work full-time, and work an opposite schedule of your spouse… time can be hard to come by. I missed planning the Halloween party because my dad broke his hip during the planning week and I went to be with him and support my mom. So I am trying to do a lot more for Christmas to make up for not being so involved last time around.

Saturday, December 17, 2011

Starabella Shines Bright!

Not long after I put out “Fixing” Autism I read a comment from a woman by the name of Sharon Fialco saying that they too had a child on the spectrum and that her daughter was very musical. In fact her daughter was a pianist and composer. Together with her family they put together a trilogy of books complete with musical accompaniment. The comment was very warm and touching. Sharon went on to say that she was so moved by my video that she wanted to send me a copy of the books as a sign of appreciation for my video.

I was taken back and a little leery of just giving out my home address, but the gesture seemed genuine and a quick Google search made me rest a little easier as I looked over their website and read some more on the Fialco family.

Thursday, December 15, 2011

Fixing the Misconception

It is time to answer another question from the old mailbag. This one is BY FAR the most often asked question. I have answered this in various posts and responses, but perhaps it is time I put the answers all in one spot so that I can just reference something for people that are having a hard time connecting the dots or are quick to assume that I am suggesting something that I feel I clearly am not.

Suzi N. asks on my Facebook page:

When you used quotation marks for the word "fix" in your video, what did you mean? I am part of a group - and right now that is the main discussion. To me, and please correct me if I am wrong, it is about making Bianca the best she can be by fixing the system.”

Thanks for asking Suzi! It means a lot of things. Perhaps I can best answer you by saying what it does not mean. It does not mean that I view people with autism (or any disability or disorder) as being broken people in need of fixing.

Sunday, December 11, 2011

Family Matters

"Stay committed to your decisions, but stay flexible in your approach."
- Tony Robbins      

One of the most common questions I get asked by other parents that have a child on the spectrum is about having more kids after an autism diagnosis has been introduced into the family unit.

I was recently asked this on my Facebook page and I wanted to give the response the weight it was due, so I decided to answer the question via my blog:

So I'm trying to decide, when is the best time to have another child. My son is 2 and has ASD, and is our first. I think it'd be good to have another child for him, and I want them to feel close, but at the same time I don't want to take any of the attention he needs away from him. So I'm wondering if you might be willing to let me know what your opinion is on this subject?“ 
- Leslie D.

I don't know that there is a right answer to this question Leslie. It is something that as to be talked about between you and your husband at great length though. I can share with you my experience, and provide the disclaimer that I am not sure that what we did, nor how we did it was ideal. I am certainly not suggesting that our story be used as a blueprint, so please take what I am about to write for what it is worth... my flawed experience.

Tuesday, December 6, 2011

Caring for Military Kids with Autism Act

Please watch the following brief video:

Lets lessen the burden on military men and women by treating their families with the respect they deserve.

Please write your representative by showing your support in the passing of Caring for Military Kids with Autism Act H.R. 2288.

Also, please check out Rachel's blog Stimcity for blog posts written from the heart.

Thanks for everything you are doing Rachel and for your support of me. If there is one thing I have learned, from my advocacy it is that we are all in this together and the support from others who are dealing with ASD is amazing. We are family.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

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