I'm not fighting against YOU, I'm fighting FOR my son.

I'm not fighting against YOU, I'm fighting FOR my son. That seems to be really hard for most to understand. I learned a long time ago that people would call me a wonderful mom, a great advocate for my child, a mom with a ton of knowledge and a lot of resources...until I stepped on their toes in the process of being all those things. Then none of that seems to matter anymore.

I also learned a long time ago that I was going to lose friends while advocating for my child and recently learned that I'd also lose family over it. It doesn't matter. God gave me one child and God gave that child one mother. If I mess this up, nothing else matters. So, please understand that if I hurt your feelings or if it seems I'm going up against you, that is really not the case. I am fighting FOR my child's rights and his needs. That is it. There will be other teachers, other therapists, other friends, other neighbors but there will only be one Dallas and since he cannot fight for himself, that leaves me.

Haircuts

This morning I took Dallas for a haircut. I remember the days when just scheduling a haircut would cause major anxiety for both Dallas and myself. I had to talk him through the whole thing, hold his hand, blow bubbles, distract, comfort, distract, comfort...oh and don't forget to breathe! It was exhausting. A few years ago, haircuts started to become easier but it's been a process. He still has a little anxiety, still does that sing-song whining throughout the haircut and I still hold my breath until it's over, knowing that he could go into a full meltdown mode at anytime. Until today.

This morning we went for a haircut. Dallas showed absolutely zero anxiety about the process. He went in, sat in the chair, told his hairdresser (who was not his usual stylist, by the way) how he wanted his hair to look (like a Jonas brother...lol) and then proceeded to carry on a conversation with her while I sat in another chair on the other side of him getting my own haircut. Oh.My.Gosh. Did this really happen? Eight hours later, I'm still in shock and disbelief. He went in there like it is something he does every day of his life. Something that used to be so hard is now easy. I just want to take the day to enjoy this little victory!

There are so many challenges and every gain he makes brings on more challenges that we never even thought about before...but just for today, I'm not going to think about those challenges. I'm going to celebrate another milestone that we were never guaranteed to reach!

Saying farewell to 2009...

What a year this has been! 2009 was a year of change and growth. It was a year to renew relationships and to let other relationships go. It was a year of great challenges and even greater rewards.

When I look back on the growth of Dallas this year, I cannot help but be amazed once again. One thing Dallas does is amaze me every day. His heart, his personality, his sense of humor, his attitude towards life all amaze me. I was looking at some video with a friend of mine today and it hit me that last January on his 11th birthday he had just learned to smack his lips together in order to kiss someone. Can it be possible that this happened for the first time less than a year ago? Wow.

A year ago we were still trying to encourage Dallas to come out of his shell a bit more, to let other people get close to him, to go out in the community with someone other than mom. Now as we bring in 2010, we have to teach him boundaries...let's just say he learned all that a little too well! He is VERY outgoing now, always happy to get out and about with his friends. What a difference 2009 made!

Other changes occured in our family...we had to let some people go and this left room in our hearts to reach out to old friends. Our family dynamics totally changed. I had to let go of wanting certain things done "my way" in order to let my husband be more involved in the household and especially in raising Dallas. I think it was always easier for us both to just let me take control and make all the decisions regarding Dallas' therapy, discipline, etc. Tom went to work six days a week and I worked when I could around the family's needs. This was no longer possible in 2009 and thus a shift had to occur. I'm not going to say it's been easy but it has been well worth it. Tom has less pressure financially and I have less pressure about making all the decisions regarding Dallas. All-in-all, we are less stressed as a family.

I'm sure 2010 holds even more changes, more challenges and more rewards. I think we're ready to find out just what awaits us in 2010!

A Time of Change

Fall. My favorite season. I love when the leaves start to change and the weather turns cooler...love the smell of firewood burning. There is so much about Fall that I love. Fall goes by so quickly though. It seems like we celebrate Halloween, blink and then it's January. In the past, as much as I love Fall it has been a tough season for Dallas. He gets sick a lot with his asthma in the Fall. There are a ton of schedule changes in the Fall, which if you know someone with autism, you know these are always tough. But I still love the Fall.

This Fall a lot more change is coming to our family. For one, we have decided to change some of our holiday traditions. We are taking a break from the big family get-togethers. We weren't going because we wanted to, we were going because we were expected to. Family should be more than just getting together on a holiday...family should be there for you every day. Family should understand that for someone with autism, 50 or so people in one house along with a whole bunch of food and all the smells that go with it is not an autistic kid's idea of fun. Then you add in moving it from the house it's always been at to someone else's home and it makes for a stressful day, not only for the child but for mom and dad too. Family should understand this. Yes Dallas can go and he can handle it, but he doesn't really ENJOY it. Shouldn't everyone get to enjoy the holidays? Family shouldn't wait until the holidays to see that child anyway. They should invite him into their home on other days when it's not full of people and smells.

Another big change is coming soon. I am going back to work full time in a week. I haven't worked full time since Dallas was born in 1998; I have worked from home and always worked part time. This is a big change but one that we feel we can make for the first time since he was born. We finally have people in our lives who can help me on days when there is no school. A few years ago this wasn't a possibility. I couldn't even walk to the mailbox and leave Dallas without him having a meltdown. Trying to get out of the house alone for anytime at all was very hard, let alone leaving him every day. Seeing him happily leave and go with other people just amazes me. I have always had one sister that I could leave him with, but that was it...and she's a busy working mom with five kids of her own. We needed other options. I feel so blessed to finally have these other options!

So when I look out the windows and see the leaves turning color and feel the cool air and all the changes those colors symbolize it really feels like a metaphor for my life right now. I can see how change is so hard for Dallas...all this change is hard for me too. I just hope I handle it all as well as he is right now.

Can't We All Just Get Along?

That's what comes to mind lately when I think about the autism community (or communities) as it all feels very divided to me and always has. And as usual, I feel very much in the middle.

Autism activists are divided on whether autism is good or bad (and in reality in can be both). Autism is a spectrum. As a parent whose child has been all over the spectrum, I can see why people think of autism as something negative and I can also see the positives. Trust me, when my child was nonverbal and banged his head on the wall constantly, I couldn't see how autism could possibly be anything BUT negative. I can also see how damaging those thoughts can be to an individual who has autism. Now that my son has grown up a little, I can really see how autism can be a positive. I can see how the ability to focus intensely on one subject can be a positive. I can see how his amazing memory is a positive. I can see how his abilities on a computer are a positive. However, when he was 2, the negatives were so overwhelming that the positives were not able to show through. I think this is where the group Autism Speaks is at right now.

As parents, we are divided on the causes of autism (personally...I'm not at a point in my life where I want to make this my focus. I have my own personal feelings, but I'm not willing to spend my time or energy on this issue.) My son is here. He has autism. Knowing why he has autism does not change anything for him or for me. Maybe that's selfish, but I have to spend my time and energy on making certain that he has a good life and the ability to be as self-sufficient as possible. Which brings me to the next thing that nobody can agree on...how to get there. Do we use PECS or signs for a language delay? ABA, RDI or floortime? Specific carbohydrate diet or gluten and casein free diet? Do we avoid processed foods and dyes or do we do no special diet at all? Do we put him or her in a self-contained classroom or is inclusion best? It's enough to make your head spin. And in reality these are ALL THE RIGHT CHOICES FOR SOMEBODY. None of these are "good" or "bad". They are simply options and it's up to us parents and the professionals we choose to bring into our child's life to decide how to use these options. There is no point in fighting over which options are best. Everyone is different.

I feel the same way about all this fighting within autism groups. After seeing lots of videos on youtube by both Autism Speaks and the many groups opposed to Autism Speaks, I want to challenge all of us to stop fighting amongst one another. Let's find all the things we agree on and try to work together. Working against one another only makes us defensive. We want people to accept our kids and ourselves for who we are, but we aren't always willing to do that for other people, are we? Can those with high functioning autism and/or Asperger's try to understand just a little why some parents of nonverbal kids consider autism to be a villain? Can parents with kids who struggle with language, motor control, social skills and what feels like everything try for just a minute to understand why making autism the villain hurts adults who have autism? I've said this for years: You cannot separate autism from the individual, so when you make autism out to be a negative, you are harming the very person you are trying to help!

So, this is my plea for today...I'd like to see us all work towards acceptance. I'd like funding available for families to use in a way they believe best for their child, whether that be a special diet, ABA, RDI, speech therapy, occupational therapy, etc. I'd like parents to make their own informed decisions about vaccines, but at the same time, I'd like the vaccine debate to be tabled until there is actually some concrete evidence. This is something that should be a personal decision based on personal medical and family history. Again...they aren't "good" or "bad", as someone who has had a vaccine reaction myself, I know that they can actually be both.

We don't have to agree on why autism rates are going up or even whether they are actually going up or not, we just need to work together to make the world a better, more accepting place for everyone. We have the power to change things by being more accepting and tolerant of other's differing views as parents and activists. We can try...right?

How Having A Child With Autism Has Changed Me

A study came out today that put autism in the headlines again with a new rate of 1:100 and it made me stop and think about how autism has changed me over the years.

The first thing that comes to mind is that having a child with autism has taught me how to be understanding. I can remember before I had kids when I saw a child acting up in a restaurant and I would instantly judge the parents. I still have lots of opinions on parenting, but I am much more likely to think of possible reasons the child is struggling and if there is anything I can do to help, rather than to simply decide the kid has terrible parents. Instead of an eye roll, I'm more likely to give an understanding smile to a parent whose child is obviously having a hard time.

Autism has also taught me how to let go of my preconceived notions of who and what my own child would be and/or do. Don't get me wrong, I still have high expectations for him but these are tempered with the knowledge that things that come so easy for some are a struggle for him and will take a lot more work, creativity (on my part) and perseverence. When trying to teach him anything whether that be math or behavior, there are no "last resorts"...if he doesn't get something we have to keep trying until we find a way. So I guess you could say, autism has also taught me not to give up. It's taught me how to use my own (and his) strengths to compensate for weaknesses. It's taught me how to think outside the box. I never thought I was a creative or especially a crafty type but one day I found myself creating "french fries" out of yellow foam and putting the ABC's on them, placing them in a McDonald's fry box in order to use what he liked (McDonald's fries) to teach him something he needed to learn (the alphabet)...which brings me to something else I learned...

I learned how to appreciate everything and celebrate all the little victories in life. While most parents expect that their child will talk, learn to use the toilet, ride a bike and learn multiplication, these things were never a given. Yes these are milestones that all parents are happy to see their child achieve but there is a distinct difference in not knowing WHEN your child will achieve them and not knowing IF your child will. We've been lucky. Dallas has reached all of these milestones thanks to his own determination and a lot of hard working people who have helped us along the way, which leads to the next thing I've learned...

I have learned to not give over all my power as a parent to a "professional" whether that professional is a doctor, a therapist or a teacher. I'm still the parent and I still know my child the best. I have learned to work with these professionals so that together we can use our combined knowledge and work together. They may have the knowledge of different methods we can try, but I know my son and know which ones we should try first and which ones we shouldn't try at all. I am very appreciative of all the hard working professionals who have been happy to work WITH us. Dallas has reaped the rewards, that's for sure.

I've also learned to appreciate the differences in other people and now know that everyone has something to offer. I've learned to go past what people present on the outside and take the time to learn who they really are. In the process, I've let go of some people I thought would be in my life forever and opened up my mind and my heart to new people.

How autism hasn't been able to change me (or my son) is that it has not given us a "thick skin". We both still hurt when he is excluded. When he sees his cousins spend the day (or night) with grandma or aunts and uncles and he's never invited to do the same, it bothers him (and me). When he sees his peers have sleepovers with their friends and he's not invited, it bothers him (and me). When all my friends went the way of the wind when Dallas was diagnosed, it hurt and when the people who hurt you the most constantly tell you that you "need to develop a thick skin if you're going to have a kid with autism", that hurts too. So the last thing autism has taught me is that sometimes we have to create our own family. We have to find those who accept us, who want to be with us, who appreciate what we have to offer and who don't hurt us. Thankfully I'm learning that there are a lot of people out there who do just that!

Heroes

"Mommy, what does hero mean?"

That is the question my 10 year old asked me after I showed him this: http://www.walkmoreeatless.com/heroes.html

He asked "Does this mean I can jump off the deck without a parachute?"

"No baby", I responded "That is a SuperHero and those are pretend. A hero is much better than a Superhero because a hero is real."

"Then what does a hero do, mommy?", he asked.

Oh boy....one of THOSE questions...quick....think!

"A hero motivates people to be the best they can be. A hero is someone who makes the world a better place."

At this point I'm not sure exactly whether he understood what I meant or not, but he smiled that gorgeous smile and merrily went along getting ready for school. So now I'm thinking to myself, what DOES hero mean and how in the heck did this child of mine become one to someone besides me?

I have always known he was a gift and for many years there were times that it felt like I was the only one who could see the amazing little boy behind the label. Autism. What a scary word for parents. There were times when he was 2 that even I didn't see the boy. All I saw were the autistic features that he so prominently displayed. He never seemed to notice who was home and who wasn't. As long as he had our coffee table (a.k.a. "spin city") and something in his hands he could spin on it, he was content. It wasn't always that way though. He started out as a perfectly normal (ugh...I really hate that word...more on that another day though) kid. He reached every milestone on time that first year. Laughed a lot, loved Nascar even then. He would get so excited when a race would come on television. His first word was "whoa!" which he said at the beginning of a race one day at about 10 months. We took him to a local race track and I think that was the first time that I realized something was different about him. As the cars were out taking a qualifying lap, we noticed that he did not move his head or his eyes. He would focus on the center of the track and as long as a car was in his field of vision, he excitedly waved his hands. He didn't track the car though. He just kept his focus on the center of the track, as if it was a TV screen, and he watched this "screen" until the car came back into view.

By the time he reached his second birthday, we had known for about six months that there was something amiss. Finally after being put off by his own doctor once again, I took him to mine and that got the ball rolling. At 25 months of age, he was diagnosed with Autism.

Those first few years of the autism diagnosis were really tough. Autism totally consumed our lives. I was trying so hard to "recover" or "cure" him. That was what I was supposed to do, right? I won't bore you with all the details but it was a time where all I could feel were the losses that seemed to be all around me. It felt as though I lost all my friends, my extended family dropped to the background as well. Nobody wanted to put themselves out there. Nobody wanted to offer help. Nobody wanted to be around us anymore. Maybe this was my fault as I was so consumed with "curing" my child. In the process, I lost myself. My diabetes continued to worsen. Heck, speaking of losses, I even began to lose my hair from the stress. I lost the ability to work outside of the home (although since money was tight as we also lost a lot of that chasing "recovery", I still had to find a way to earn money, which I did by doing medical transcription at home while everyone else slept...so I lost sleep as well).

As the years have gone by, with every birthday we reflect back and can see more Dallas and less Autism. At this point, I don't really think you can separate the two. Autism is just a part of who he is and will always be. One day I realized that he accepted who he is and that even more amazing than that, I had too. Even my husband, who I didn't think would ever forgive me for having him tested and diagnosed at 2, had finally reached that level of acceptance and was becoming less anxious about what other people thought or said or the looks they gave in public when Dallas was "just being Dallas" as his cousins say, when he became excited and flapped his arms or when he was stressed and would sing his own words to the tune of "twinkle twinkle little star." I am no longer scouring the internet looking for a "cure" or even a "cause" but rather spend my time helping him find out who he is and how to give him that one thing that everyone in this world needs...Passion. Don't get me wrong here, I still try every day to help him learn and grow, just like any other parent helps their child. The difference is that I no longer feel the need to "fix" him.

It seems somehow along this crazy journey that he has found his passion. He wants to be an announcer. He doesn't watch cartoons on TV, he watches game shows, home shopping type channels, ESPN and the weather channel. He has been great on the computer since he first touched a mouse at 2, and I always thought that when he spoke about wanting to make commercials that he wanted to produce them or edit them or shoot them or something. It never entered my mind that he wanted to be in front of the camera until he decided to dress up like Drew Carey for Halloween last year. This year he plans to be a local radio DJ whom he has befriended. He makes his own videos on youtube on channel MomE2Dallas.

A few months ago, Dallas saw an opportunity to be an announcer and he took it. He just went for it. Just like that. Isn't that what we all wish we had the courage to do..just to go for it at least once? I have to admit that I was holding my breath for much of his impromptu speech that day. My first instinct was to run out there and get him! I even asked my husband to "go get him". But then I thought to myself that I didn't care anymore what other people thought. He was living his dream right in that moment and I couldn't take it away from him. How amazing is it that he knows what he wants at such a young age and isn't afraid to go for it? Yep, I'd say that alone makes him my hero.



Here is Dallas making his impromptu speech at an Autism Awareness Event.