Not Going Home for the Holidays

After our horrendous plane trips last summer, we made the difficult decision to stay here in Arizona for Christmas this year, rather than flying back to Georgia to spend it with our families. While we are sad not to spend the holidays with all of our extended friends and family, it was really the only choice for us at this point. Regardless of the difficulties of getting Christmas gifts across the country twice, the high cost of airfare and the logistics involved, we would have done it if Aaron could travel a little easier. As it is, he can't.

His sensory processing problems make traveling a complete nightmare for all involved (including the 100+ other passengers on the plane), but mostly for him. When your body doesn't know how to process new sights, sounds and motions, being strapped into a car seat where you can't move for four hours on a plane full of strange people, sounds, sights, smells and motions is pretty horrible. I dislike flying for many of those reasons and I don't have any sensory problems. I can only imagine how terrible it is for him.

Luckily we have a very understanding family. Matt's parents were able to come visit over Thanksgiving and my parents will be here on Christmas. We will miss seeing our siblings, grandparents, aunts, uncles, cousins and friends but we are lucky that our parents have the ability to come spend the holidays with us. I know many families who aren't as lucky. Either because their families can't travel or they don't "get" why the child with special needs can't travel.

So, as I'm counting my blessings this year (and there are many, even though it has been a difficult year), at the top of my list will be the blessing of a loving, understanding family who has always been there to support us no matter how bumpy the road has been or how far away we are. It is not lost on me how much you mean to all of us.

Right after that will be the blessing of caring, supportive friends who are always there for me when I need to talk or vent. Even if you don't completely understand what I'm going through, it means the world to me that you will take the time to listen to me and try to sympathize.

I think I will save the rest of my blessings for another post, but this deserved a post of its own. And if you are reading this, you are probably one of those people, so thank you, we love you all!

Let's Hear it For Respite Care!

We finally started respite care last week. I hired two different respite care workers from the same agency (actually the same clinic where Aaron goes for OT, speech and feeding therapy). One of the girls came on Monday morning. It couldn't have worked out better, I was so pleased with her. She sat down and started playing with Aaron right away. I gave her some basic instructions about where things were, what I was going to be doing and she seemed quite comfortable. I decided to stay home since she hadn't ever watched him before and I want us all to be totally comfortable before I actually leave him home "alone". But I was able to stay in my room and write and get a few other things around the house accomplished. I heard Natasha (the respite provider) playing with Aaron, talking about colors and shapes, all sorts of things. He didn't fuss or look for me the whole time and he seemed very happy all morning. I am just so happy that it worked out so well. Hopefully the trend will continue!

The other girl I hired came for the first time yesterday and I was equally pleased with her. The whole morning went smoothly and both she and Aaron seemed comfortable. I was able to get a lot of work done and definitely felt more relaxed than I do on a normal day.

Both of them have already needed to cancel once on days they were supposed to come, but they both had significant and legitimate reasons. Hopefully it was just a fluke that they both happened within a week of each other and things will go more smoothly from here on out. Time will tell I suppose.

I am so glad it has worked out so well thus far. I don't want to get too excited, because I know as soon as I get comfortable something is going to come up and throw our routine out of whack again, but having this time is such a blessing to me. I can already tell that I am happier and so is Aaron when we aren't together 24/7/365. Having just a few hours on a regular basis makes such a difference. I can concentrate on other things I need to do without him pulling on my arm every 30 seconds and he gets undivided attention from the respite providers. I feel like I am able to devote more attention to him when we are together too because I'm not constantly trying to do everything else that needs to be done. Everyone told me I would say this, so I'll go ahead and say it : I should have done this sooner!

I don't know if I really believe that though. I think I did it now because I felt like we were both at a point where it was going to be good for us. And I don't think I could have said that six months ago. But there is no point looking back and thinking about decision that we could have made, all we can do is plan for the future and go with the decisions we did make.

Food Allergies? Sure, Why Not

The latest saga in the never ending medical drama "Aaron's Anatomy" is all about food allergies. As if having Celiac disease and being lactose intolerant weren't enough, for the past two + months we have been trying to figure out why Aaron has been getting sick every week or so.

We have come to the conclusion that a soy allergy/intolerance is to blame. Every time he drinks soy milk (which was the only thing he could drink other than water since he can't have regular milk) or eats anything with soy in it, he either vomits or screams with unbearable stomach pain.

Of course, similar to gluten, EVERYTHING has soy in it. Even half of the gluten free food we (used to) buy is made with soy flour, soy lecithin or some other derivitive of soy. So, Aaron's diet now consists of fruit, Chex cereal and the two kinds of gluten free crackers I have found that don't contain soy. Not exactly well balanced. He refuses to eat meat and most vegetables(although last night he ate chicken and broccoli - it was a miracle - and probably a one time thing) and won't take any of the dozens of vitamins I have tried to give him.

I am pretty much beside myself with stress about what the heck I am supposed to feed him now. To make it worse, he's three, very picky and doesn't understand why he can't eat what everyone else is eating. And putting the rest of the family on a gluten free, soy free, dairy free diet isn't exactly practical.

To add to the apparent entertainment of the medical ailment gods, we are going through allergy testing now and his test today showed that he may be allergic to peanuts and corn. WHAT THE H*!? It's not definite yet, so all I can do is pray that today's result was wrong. He doesn't like peanut butter anyway, so that one doesn't stress me out quite as much, but corn?!?! His grains were already limited to rice, potatoes and corn and if you take away corn - I really don't even want to think about it.

Alright, I'm done whining and complaining now. I will deal with it, just like I deal with everything else that gets thrown at us. But sometimes I just want to say - enough already!

Boo! I'm Back!

Now that I don't feel an obligation to blog every day, it's hard to keep up with it again. In my defense, we have had an incredibly busy (even for us!) couple of weeks. Halloween, Jacob's birthday, two doctor's appointments, Jacob's birthday party, a day in the ER for mom and our usual schedule of therapy four times a week.

We are also in the process of trying to find a respite provider for Aaron and who knew how much time that would take up! Once we got the hours approved, my phone started ringing with dozens of offers from companies that have respite providers available. So now we get to start the process of weeding through them all, interviewing and choosing the best person for us. Interviews start tomorrow - wish me luck!

Halloween was a lot of fun for all of us. Jacob has gotten into being "scary" this year and decided he wanted to be a vampire. It was an easy enough costume. I found a black cape with a red lining at Michael's and he wore a white button up shirt and black pants. To add to the effect, we painted his face white/gray and painted blood dripping down his chin. He wore one of the half dozen pairs of vampire teeth that he owns and was a happy camper. I must say, I think he made a pretty good vampire.

We went trick or treating with one of his good friends from school, Ethan. He and Ethan also happen to share the same birthday - and his parents are named Matt and Kristi. Same spelling and everything - crazy, I know. Aaron dressed as a pirate and we pushed him in the stroller around the neighborhood. We had planned to let him get out and walk to a few houses, but there were literally HUNDREDS of kids on just one street in our neighborhood and it was just too hectic. He had a great time just looking at everyone though. Jacob loaded his plastic pumpkin up in a little over an hour and we headed home. It was a bit crazy since it was a school night, but we all had fun and we'll have enough candy to last until next Halloween at least.

In an effort to keep this post from looking more like a novel, I will write about Jacob's birthday party and the rest of our week in a separate post!

Thank You!

October has come to an end and that means the end of Down Syndrome Awareness month and the end of the 31 for 21 blog challenge. Although I didn't quite manage to blog every single day this month, I hope you enjoyed following our family and learning a thing or two about Down Syndrome.

Just because the month is over doesn't mean I won't be blogging anymore of course and I hope you'll continue to read along.

Aaron has brought so much to our lives but the greatest gift he has given us is a new perspective on life. There is no way to really explain it adequately. He gave me the ability to see that the world is so much bigger than I had come to believe. That what is going on in my little world shouldn't consume me. That there are many, many people out there who are still discriminated against because of their "disabilities". That I can make a difference, even if I am just one person. If I make a difference in just one person, it is still a step forward. That I can take something that terrified me just three years ago and turn it into a passion that I will work tirelessly for. That even though people with Down Syndrome look a little different and learn a little differently, they absolutely deserve a chance at life and they make a positive difference in this world. I have no doubt that my little boy is going to grow up and do great things.

Thank you for taking the time to read my blogs and for supporting my family!

We Need Some Organization People!

Most of you know Aaron was born and diagnosed with Down Syndrome in Atlanta. For some reason, Atlanta has a pretty DS community and one of the national Down syndrome organizations (National Down Syndrome Congress) has it's headquarters there. The Down Syndrome Association of Atlanta (DSAA) is huge, very well organized and does a lot to help the DS community there. Although Aaron's diagnosis came as a shock to us, we were given a packet of information about Down syndrome before we ever left the hospital that gave us a lot of hope and resources to connect with other parents. There is a Down Syndrome clinic at Emory that we have taken Aaron to every year since he was born. He sees a Developmental Pediatrician there and she has been an invaluable resource to help guide us through the maze of health care providers and various medical issues that are associated with Down syndrome.

When we moved to Phoenix, I just assumed there would be something similar here. It's a big city, so surely it must be the same, right? I found an group online that I figured was the Phoenix version of the DSAA. But when we got here, I discovered that the group I had joined has most of it's meetings on the other side of town, in the Scottsdale and Tempe areas. Then I found out that there is another Down Syndrome support group that ALSO meets on that side of town.

Honestly, I still don't get it. Why two different organizations that claim to do the same thing? Why not join forces? Surely they could better benefit the community that way. And living out here in the West Valley, I still feel like we are virtually left out of it completely unless we want to drive an hour to get to a meeting or event. I spend enough time driving, I really don't want to make that drive too. There is no Down syndrome clinic here either. That's not such a big deal. There is a Special Needs Clinic at Phoenix Children's Hospital that we go to. We actually get to use our doctor there as our regular Pediatrician. We love Dr. Wendy, she is very knowledgeable about DS and she is amazing with both of my boys. I would still like to see a Down syndrome clinic though. Somewhere that families could come on a yearly basis - especially those families who don't have the luxury of coming to the Special Needs clinic because they live too far away.

I really think the people of the West Valley could benefit from some programs for our families and kids too. This is a big city and we shouldn't have to drive to the other side of town just to get information and support. One of the DS groups says they have a West Valley chapter, but I haven't seen any events over here in a long time. Honestly, I'm kind of at a loss as to what to do about it. I am frustrated by the separation of the two groups. I would just start my own group over here in the West Valley, but what good would that do? Then there would be three DS organizations in Phoenix and that would leave our community even more divided!

I think it just irritates me because I know how good and powerful it can be and I just don't see that here. Any ideas or suggestions would be appreciated because I'm just not sure what to do at this point!

Lose the Training Wheels

When we moved to Phoenix a year and a half ago, I met a wonderful woman named Laura. She and my Aunt Linda went to nursing school together and she just happens to live here in Phoenix and has a 14 year old son with William's Syndrome. Knowing no one when we moved out here, it was a huge blessing to be able to connect with someone who not only knew my family, but knows what life is like when you are raising a child with special needs. Although we live on opposite sides of town, Laura and I have become good friends and I feel so lucky to have her in my life. She has helped me and encouraged me more than she probably realizes.

Last year, Laura took on the enormous task of bringing an amazing program to Arizona called "Lose the Training Wheels". She worked so hard and raised a ton of money to be able to provide this camp to children with disabilities in the Phoenix area. They spent a week last winter with these children and taught them how to ride two wheelers using a progression of adaptive bikes.

To you and me, this may seem like no big deal. But it is a huge deal to the majority of children with a disability. 90% of people with Down Syndrome and 80% of people with Autism never learn to ride a bike. But this program can and does make it happen - usually in under a week! This simple skill allows our kids to feel like and fit in with their peers. It helps improve their confidence and independence in a very short period of time. It's one of those simple things that so often gets overlooked in a child with a disability. But the rewards when you take the time to focus on that skill are immeasurable.

Laura is bringing the camp back to Arizona again this winter. It is a lot of work for her, but it is so rewarding when the kids that come to the camp accomplish that goal of riding a bike.

She still needs help though. If you can give anything to help make a child's dream come true, I know she and those kids would be forever grateful. You WILL BE making a difference - please help if you can! (If you choose to donate through these links - be sure to specify that your donation should go to LTTW-AZ)

Here is a better link for donations (sorry, I couldn't get it to work when I posted this last night) - 2011 Team Nicolas.

We still need to raise $15,000 in less than two months - any amount helps!