Speak Up 4 ASD

2005-11-29T12:17:00.000-08:00

Sorry to be so out of touch, life called but I'm back and I'll be writing more later. Just to let everyone know "Angels Take Flight" and "Blue Sky Studio" websites have been under construction and will be up and running in a few weeks. Hopefully by Dec. 10th. Thank you to everyone that has been logging in and reading our about our journey. Love, Denise

2005-11-07T17:16:00.000-08:00

Sunday we decided to rent movies for Logan and spend some time together after a very busy weekend. When we got to the video store Tony came around and got Logan out of the car. I looked through the window and noticed Logan was waving good-bye to me. I was so overwhelmed with emotion actually made me cry. It may be hard to explain, but when I saw how grounded Logan was, resting his head on Tony's shoulder, it just made me feel so good that he felt safe and comfortable. But then when he waved good-bye it just caught me by surprise. Moments like these are the ones we celebrate- a wave, a word, a new sign, some small sign of engagement. It may seem so simple and overrated to someone else, but it's those simple things that Logan has brought to our life and we have learned to cherish every one of them.

I've been working on websites, one for my studio, Blue Sky Studio, and the other for Angels Take Flight. Both are under construction and will be open by Thanksgiving. I'm excited about both of them, I'm going to start contacting more people about traveling with their chidlren that have Autism and I hope to find more people to contribute to the site. The possibilities are endless.

I apologize for the generic blog, I have to find time to post some photo's etc. Also, need to back track a little for those of you who are just joining us. Need to fill in the gaps with more info. on Logan's journey. This will be a great way to keep family and friends updated.

Blessings.....Denise

2005-11-05T05:38:00.000-08:00

Getting ready for the weekend and had a few things to share with you. I was reminded of a moment I had with a chiropractor when I was in South Africa. We were talking about people visiting South Africa and she had mentioned those that come and want to help everyone, she referred to them as 'bleeding hearts'. She was not being mean in this reference in any way, the conversation was very gentle and inspiring. She then said that it's so important to make changes in your own community and then it will have a ripple affect. These words are not verbatim, but the message is the same. At first I remember thinking, "oh God, I think Im one of those bleeding hearts she is talking about, I just want to help everyone". That small moment with her has stayed with me and has always put things into perspective when I needed it.

So what does this have to do with anything? Well it has a lot to do with my goals for 'Angels Take Flight'. I know that right now I stand with a few strong family advocates that are rooting for this organization to become a reality. But in my heart of hearts I know that the most important part is the process. Its the journey I will take to make Angels Take Flight a reality. It's the conversations I will have with people between now and then.

It's so important to be gentle and allow moments to happen without forcing them into action. I've found from personal experience that when I force things it take so much of my energy and usually ends up not working. I'm not suggesting to sit back and let life happen. I'm suggesting to be open to what God, the universe (what ever you feel most comfortable with) has for you. Sometimes what you are looking for does not always look they way you had anticipated. Act on your ideas but don't put so much pressure on them that they slip right out from underneath you.

I will start today being open to what opportunities might be waiting. I have a thought, I act on it, gently, if there isn't a connection I move on without hesitation. It might not be the right time, or maybe I have the wrong person; and most likely this person will provide information that will lead to the right person, or have a message for me that leads me in the right direction . But I don't get hung up on why it didn't work, I don't get mad at myself or blame anyone. I have to have faith that I'm doing the right thing and with good intentions.

In the process of making 'Angels Take Flight' into a wonderful support system for families and friends, I will be thankful for every step of the way. I have already had some wonderful conversations with people, and really that is what is most important. The words we choose, the way we interact with others. An act of kindness, taking a moment to be nice to a stranger. So if I can just get people talking that will be a great accomplishment in itself. Just knowing that someone is getting ready to travel right now and will be open to the people they will meet on the plane, and to be more understanding of others needs, is truly a gift in itself.

I pray for everyone to have strength to be open to the possibilities and to renew the faith that a small step can be the most important one. It has been the simplest acts of kindness from strangers and those that know me, that warm my heart and inspire me.

Have a wonderful weekend- I look forward to talking with you again soon.....Denise

2005-11-04T14:05:00.000-08:00

Here's a thought....what if there was some way the airlines tagged a ticket notifying any personnel handling this information that this child/person has special needs? I'm not sure if they have something like this in place already for those that have a physical disability, but it's worth checking into. (I'd like to thank my mother for planting this seed after we had returned from France. )

Does anyone know firsthand if there is something like this in place?

This is a start, I'll contact the airlines next and keep you posted.

Thanks to all the positive feedback from family and friends...I'm hoping to help change the way the world sees Autism, one person at a time. There are so many wonderful people trying to do the same thing, small steps are better than none.

Recently, I was struggling with a comment a friend made....frustrated that this person didn't really understand that it's not that easy to just jump in the car and meet her for lunch. Being in the thick of it, I didn't see the opportunity. It took these words, "educate, educate, educate.....be the advocate you want to see in others"...someone very close to me said this and made me realize that the only way we will be effective is to help others understand, somtimes it's easier than others, but I have to remind myself to step back for a moment and be still and I will be shown the way. I thank everyone that is making efforts to better understand Autism and to be more compassionate towards those that face challenges that are not always visible.

Have a wonderful evening, anyone watching this weeks "The Nanny"? Thanks to all that have let me know that it is airing tonight.

Blessings....Denise

2005-11-04T05:29:00.000-08:00

Woke up thinking about the blog, wondering if anyone had posted a comment. Well......I see there is a comment, no offense but I'm not sure that a blog on dog houses and french kissing was what I was looking for. Welcome to the world of blogs, may be an interesting journey...

So, back to Angels Take Flight, how can this become a reality? Truly I will need the strength and support of other families, friends and strangers. I was never much of an advocate, but with my son's diagnosis I take on a new role.

So how do we do this?

Are you the person to help me?

Do you have a child with ASD that travels alot? What do you do to prepare yourself for your trips?

Is there anyone out there that works for an airline that could provide information on how to express our needs effectively when traveling?

Is there specific information about ASD in training materials for airline/airport personnel?

If we only have a brief encounter with an airline official (any transportation official for that matter), how do we communicate our needs, what language do we use?

We had a rattling experience on the way back from Amsterdam. Long lines, two check points where we needed to go through the screening process, a lot of tired, and upset people. We had used a letter our pediatrician had typed up, explaining that our son has ASD and deals with sensory challenges. We were able to get moved to the front of the line, which made people even more upset. At this point I was feeling like we needed an escort, people cutting in between me and my husband, not letting my 6 month old daughter and my mother get through. It was definitely a tense moment. All we were trying to do was to get our son to an open space, and understandably, why would everyone know this, they just see us getting through before them.

Then as we go through the detector's our son, Logan, does not want to go through by himself, he is standing in front of my husband and then the screener grabs him and helps him through. My heart broke, Logan was uncomfortable, scared and one of his biggest sensory challenges he faces
is the sudden touch, especially from a stranger.

So at this time, I am mortified, not really knowing what to do except help my son feel safe again. Times have changed and even though I wanted to jump in there and stop the screener from touching Logan, I knew that I didn't want to make any sudden moves, or cause them to be alarmed in anyway.

There has to be a better way to go through this process, we anticipate many international trips and are looking for a better plan. I'm looking for a positive partnership, working together to help families caring for children with ASD to see the world outside their homes.

This morning I searched the blog directory and found over 77,000 that were related to Autism, so people are talking, and I hope they will talk to me about their travel experiences and advice. Looking forward to hearing from you.

I'm off for the day, speech therapy appts., interviewing a babysitter, life in general.

Blessings to all..Denise

2005-11-03T21:46:00.000-08:00

Someone very close to me recently suggested that I start a blog. A bit resistant to the idea, only because I wasn't very familiar with them, I have decided to bite the bullet and give it a try. Truthfully I thought "would anyone really be interested in what I have to say?", maybe not, but that hasn't stopped me before. I'm sure I will not run out of things to talk about, but my main goal here is to give you a glimpse of our life and to raise Autism awareness in anyway I can. I hope this gives us the opportunity to connect with family, friends and those we have yet to meet.

Our son, Logan, (2-1/2 yrs. old) was diagnosed with Autism Spectrum Disorder this past June. More recently he was diagnosed with PDD-NOS (pervasive development disorder-not otherwise specified). Truly there are a million things I could try to address when talking about ASD, but I feel in my heart that my passion is to help Logan move freely in this world without restrictions. With that in mind I am moved to help families travel comfortably with their children with special needs. It is hard enough going to the grocery store without being judged or finding yourself in a difficult moment with your child, so you can only imagine what it takes to get on an airplane.

In September went to Lyon, France where my husband, Tony, presented a paper at the Computers in Cardiology conference. We knew before leaving that we would face many challenges, some of them we were prepared for and some we were not. After facing these challenges I had returned home inspired to start a non-profit called "Angels Take Flight", there were so many opportunities for change and to help raise awareness. I would love to talk to anyone that has travelled with a child/adult that has autism and how they have prepared themselves for their flight. If statistics are accurate, 1 out of 166 children will be diagnosed with ASD, that is a lot of people staying at home. It is one of my greatest desires to help put a support system in place that will allow families with children with ASD, to move freely in this world and to experience it through their childrens eyes.

Before leaving for Lyon, I tried to find an Autism society in that area, in hopes of finding a family I could connect with. I was not able to connect with anyone directly, and felt that if I had it would have been a great resource for information. I would have asked things like...What attractions are child friendly? Can you recommend a good park, a place where Logan can run around without restrictions? Would you like to meet us? Is there a resource for organic foods? (our son does have certain diet restrictions, it is not always easy to find things for him in our own grocery store, we did learn to take peanut butter with us when we travel). What is a quiet time to take the metro? There are a ton of questions I would have had for them. A parent resource at our destination would have been a wonderful benefit.

I have so many ideas to share with you and as inspired as I am to continue, I must stop here. I look forward to picking up where I left off. I have a feeling this will bring some wonderful people into our life....we look forward to hearing from you and sharing our ideas. And for those of you that know us, you might feel like you are beginning in the middle of the book, I will take time to back track and talk about the early days of Logan's diagnosis, until then, please send us any questions you may have, we welcome them.
Have a peaceful night.... Denise