Busy Day!

I don't have much time left to write tonight. It's been a crazy busy day. Took Jacob to school, went straight to the doctor with Aaron, came straight home to pick Jacob up from school (they got out at 10:50 today because of parent-teacher conferences), went out to meet a friend for lunch, went to the lab to get some supplies for Aaron's medical tests, went to the allergist to get my allergy shots, came home for nap time, got Aaron up and his dinner together, left to get my hair cut, came home and put Aaron in bed, put Jacob in bed and now it's time for me to go to bed!
Hopefully tomorrow we won't have to spend quite so much time in the car. I'm sure Aaron will appreciate that. :-) 
For anyone who is wondering, we still don't have any answers as to why Aaron has had an on again off again stomach bug for the past month. We have to go through some tests and hopefully that will give us some answers in the next week or two. I just hope whatever it is can be easily treated so he gets better! My poor boy has been sick enough and we are both definitely tired of this particular illness. Prayers are always appreciated.
Good night everyone - may we all have a slightly more relaxed tomorrow!

Why Therapy?

A significant portion of my time each week is spent at various therapy appointments with Aaron. He currently goes to therapy four times a week for an hour each visit. He goes to physical therapy, occupational therapy, speech therapy and feeding therapy. Before Aaron was born, I didn't have a clue why all of these therapies might be necessary. After three years, I can say I understand why they are absolutely essential.

In an earlier blog post, I mentioned that the average life span of a person with Down Syndrome has increased from age 25 in 1983 to age 60 today. That is over double the lifespan in less than three decades. Does anyone else think that is just incredible? Can you think of any other condition that has shown that kind of improvement with no medication or vaccine? So what has happened in the past three decades to make this possible?

Personally, I think it's because doctors, researchers and even parents finally woke up and realized that people with DS are capable of learning and contributing to society. Rather than just being allowed to survive in institutions, people gave them to chance to live and grow into worthy members of their communities.
So, now that I'm off my soapbox, I wanted to explain why we spend so much time going to therapy. Aaron started therapy when he was six weeks old. Every state provides an Early Intervention program that helps parents of children who are developmentally delayed get connected with therapists. These therapists typically come to the family's home and provide therapy for the child to teach them the skills they need to develop. When he was six weeks old we started with physical therapy once a month. His therapist would come to the house and show me how I could help him by using infant massage, joint compressions and various other tricks to improve his gross motor skills. With her help, he learned to hold his head up, roll over, sit up, combat crawl, crawl on hands and knees, pull himself to stand, cruise along furniture and finally (about six months ago) walk. There are so many other skills he had to learn to achieve all of those goals that it still amazes me. Things that most kids do automatically and parents don't even notice are things that we had to put significant effort into learning. Each one takes time and kids can't do things like sit, crawl or walk without mastering all of these smaller steps first.

He now goes to physical therapy at a clinic because they have more equipment that they can use to work with him and it's good for him to get out of the house and interact with other kids as well. He is working on walking up and down stairs and reaching up to grab things without losing his balance. He really has made a lot of progress looking back on it and his therapists are a big part of that.

As for his other therapies, his feeding therapist is working with him on his sensory issues with his mouth and helping him learn how to feed himself with utensils. He has no problem feeding himself with his hands, but using spoons and forks is still pretty tricky - and messy. He has some serious aversions to certain sensations in his mouth and flat out refuses to let me get near him with a toothbrush. Although I am happy to report that he went for his first dentist's appointment this week and it wasn't a complete disaster!

His occupational therapist works with him on fine motor skills. We got a new OT just a few months ago and since then he has made amazing progress. He is finally able to make a pincer grasp with his fingers and is actually doing phenomenally well manipulating small objects. This new OT has a lot of experience with children with sensory processing disorder and has several family member with Down syndrome, so he is a great match for Aaron.

His speech therapist obviously works with him on speech, but it is a lot more than teaching him how to talk. She works on total communication, so she is teaching him to verbalize, sign and visually identify objects. He has made a lot of progress in this area recently as well. He is learning to identify some of his colors by signing, trying to say the words and pointing. It's so amazing to see that he understands when we talk about the color of something. If you think about it, color is sort of a difficult concept for a child because it is not an actual object, it is a description of an object. But he is getting it. And it's fantastic.

I could go into a lot more depth about therapy and why we spend so much time going to therapy every week, but I think this post is long enough. :-) If you have made it this far - thanks for taking the time to read this and I hope it has helped you understand a little bit more about Aaron's day to day life. Until tomorrow!

Sick of Being Sick

Over here at the Duda house, I feel like we have been under quarantine for almost a month. We have been dealing with a nasty stomach bug that has hit all of us, but apparently doesn't want to leave my baby alone. Aaron has now been through the vomiting/diarrhea/get better cycle five times in less than a month.
It is beyond frustrating. I'm a nurse and I'm at a complete loss trying to figure out what is happening to him. Normal stomach viruses don't do this. Once you get it, you don't usually get it again, and certainly not four more times.
We have a doctor's appointment on Thursday and I'm praying she can figure out what is going on. I am exhausted and I know he is feeling even worse than I am.
One thing that we have been dealing with since Aaron was born is his weakened immune system. This doesn't necessarily affect all people with Down syndrome, but he is one of "lucky" ones. He tends to get sick a lot more frequently than most kids his age and it is harder for him to fight off illnesses when he gets them. It is stressful and frustrating, but overall I feel very lucky. He has never been hospitalized and he has only been to the emergency room once. But we do spend a lot of time at the doctor's office. You know you spend too much time there when you walk in and the front desk girls say "Aaron! We haven't seen you in so long!" and you were there two weeks ago...
So, there you have it. I am sick of these germs!

Why Do I Bother Leaving the House?

Going pretty much anywhere with Aaron is almost always a total nightmare. I know going out with kids is never the easiest feat, but there is just something inherently more challenging about going somewhere with him. I don't know if it's because he has Down Syndrome, Sensory Processing Disorder, Celiac Disease, a combination of all of those or just because he is difficult, but almost every time we return home, I am exhausted and feel like I would prefer to never leave the house again.
For all of you out there who can't understand how my sweet little boy could possibly be difficult, let me explain. First, I have to pack a diaper bag which includes at least one complete meal and enough snacks to satisfy a very picky child on a gluten free diet regardless of how long we are going to be gone. It is inevitable that he will demand food the moment we get in the car and the entire time we are away from home. If I don't have the food he wants, he will scream and throw things until we return home, where he will promptly forget that he was hungry. This occurs nearly every time we go anywhere. Despite my best efforts to pack between 8 and 10 different types of foods for him to eat, none of them will be what he wants. And I can't rely on ordering food for him since not many places offer gluten free food - and I have never seen a gluten free kid's meal at a restaurant.
Second, he hates riding in the car, plane, or anywhere else where he is strapped down in a five point harness. He is incredibly strong (like freakishly strong) and is able to twist and wiggle his body into unimaginable positions to get out of whatever device you are attempting to use to restrain him. Most of the time I can get him buckled into his car seat IF I sing to him and he happens to want to hear the song that I am singing. If I choose the wrong song, he will yell, shake his head "no" and make it impossible to buckle his seat belt. So I continue singing different songs until I happen upon the one that he likes at that moment and finally get him buckled in. He then proceeds to yell or fuss for the entire car ride.
Finally, once we get to our destination - whether it be the grocery store, restaurant, etc - he typically screams for almost the entire duration of the outing. I bring toys he likes and they usually get thrown across the room. I bring food and attempt to feed him and it usually ends up on the floor or he just yells and refuses it altogether. I try singing to him and talking to him and sometimes that works, but it makes it pretty difficult to shop or eat if I spend the entire time trying to entertain him.
I think most of these behaviors are due to his sensory issues. He doesn't like sitting in the grocery cart, he doesn't like being confined in his car seat and he doesn't like unfamiliar places with unfamiliar sounds, sights and smells. He does like people watching, but that only interests him for so long. He wants to be free to run around, grab everything within reach and explore. The problem with this is that he has no sense of safety awareness and no concept that he needs to stay with me rather than running off wherever he wants to go. And he is fast. Most children at least have some sense that certain situations aren't safe and they want to stay close to their parents when they are out in public. Aaron does not.
Before I had him, if I had seen a child behave this way or heard a parent say they could not get their toddler to do something, I would have thought (and did think on a few occasions) that the parent was doing something wrong. There is no reason a toddler should have more control than the parent. But now I know better.
Believe me, it's not for lack of trying to correct the behavior that Aaron acts this way. Redirecting, time outs, stern voices, I've tried it all. He knows right from wrong in many cases, but he just doesn't care most of the time. I don't mean to make him sound like a monster. I don't think he has control over his behavior in many situations and we are certainly working on that. And I can see glimpses that things are getting better. Maybe we'll be able to enjoy a meal at a restaurant as a family some day. Until then, I think I need more patience - and naps.

Erasing the Myths

Some of what makes Down Syndrome scary for so many people is the many myths that surround it. People often think that people with DS are unable to learn, are very sick all the time and die young. As many as 90% of people who get a diagnosis of Down Syndrome before their baby is born choose abortion rather than giving their child a chance at life (more on this appalling statistic in a later blog post).

So I just want to share a few facts about Down Syndrome that will hopefully help people realize that it is not as devastating a diagnosis as many believe.

• Life expectancy for people with DS has improved dramatically over the past few decades. Today, the average life expectancy is 60 years old - compared to 25 years old in 1983. It is widely believed among experts that people with DS born today will live as long as their typical peers. 
• Although Down Syndrome causes developmental and cognitive delays, a majority of people fall into the mild to moderate delay category. 
• The chances of giving birth to a child with Down Syndrome increase with maternal age (specifically over the age of 35). However, 80% of children with Down Syndrome are born to mothers UNDER the age of 35 (I turned 28 a week before Aaron was born). 
• Down Syndrome is the most common chromosomal abnormality, occurring in 1 out of every 691 live births. 
• Down syndrome is not a disease, it is a genetic disorder (although it is usually NOT inherited). The medical term for DS is Trisomy 21 - which indicates there are 3 copies of the 21st chromosome instead of the typical 2 copies. 
• Incredible advances in research have been made in recent years. Many researchers and scientists now believe that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the near future. Clinical trials have recently started for a medication that hopes to improve cognitive function in people with DS.

I'm not going to lie, raising a child with Down Syndrome isn't easy. We go to therapy four to five times a week, have 8 doctors we see on a fairly regular basis and watching my friend's children grow and hit their milestones when my son isn't, is difficult. But that doesn't mean it isn't worth it. It doesn't mean Aaron isn't going to have a wonderful life and make this world a better place because he is in it. He's already made my life better.

31 for 21 - Down Syndrome Awareness!

October 1st - it's Down Syndrome Awareness month! I am participating in the 31 for 21 blog challenge again this year. Hosted by Unringing the Bell, 31 for 21 is a challenge for bloggers who have been touched by someone with DS to blog every day in the month of October to help raise awareness about Down Syndrome.

So I'll be posting something new every day. Facts about Down Syndrome, stories about how it has affected our family and of course updates about Aaron. I hope you'll join me on this journey and maybe learn something in the process.

One of my favorite phrases used in the DS community is: "We're More Alike Than Different". It is so much easier to notice our differences than it is to think about our similarities, but sometimes it's important to do just that. Rather than focusing on how different people with DS are, try taking a few minutes to think about how much we have in common.

People with Down Syndrome can learn, love (often better than the rest of us), play, work, sing, dance, cry and laugh. They might learn a little more slowly and differently than most, but that doesn't mean they can't learn. They - and anyone else with a disability - deserve to be accepted as the people they are, rather than stereotyped by an extra chromosome or whatever their disability happens to be. 

Updating September

Somehow an entire month has slipped by - again. Rather than go in and try to write posts for every event we have experienced during the past month, I'll just round them all up in one.

First and foremost - Jacob was chosen as student of the month for his class at the end of August. For the very first month of school! We couldn't be prouder of him and he was absolutely ecstatic when he found out. He has been doing amazingly well in First Grade. He loves his teacher, his class and Math! At Jacob's school, they have "SuperStar Assemblies" every month. The entire school comes, parents are invited and honestly it's like a big party. They recognize the kids that were chosen as students of the month from each grade, they announce winners of various contests they have held throughout the month, a student or group of students will perform and they play fun music and dance! They teachers at his school are young for the most part and they all really seem to love their jobs. They get dressed up in crazy outfits and dance with the kids. It's great that they make learning so much fun. It makes such a difference to the kids when their teachers are happy to be there and make those six or seven hours they spend together every day fun and interesting.

Later in September, we all came down with a stomach bug. It was brutal and none of us were able to escape it. Aaron got it the worst (of course). He ended up getting it three separate times in a two week span. I think we are just now all fully recovered. I am trying not to complain too much because it was the first illness any of us have come down with since school started. Considering our history with germs, we are doing pretty well.

Aaron has made some great advances this month too. He is definitely developing his independence and I have discovered that he does much better at therapy if I am not around. So I have been sitting in the waiting room when we go to therapy at the clinic and just stay in another room when we have therapy at home. We got him a (very large) bean bag chair for his birthday and his Speech Therapist has been very impressed at how much better he is able to concentrate when he is sitting on (in?) it. Because he has so many sensory issues, sitting in the bean bag chair calms him and allows him to use his brain to complete the task she is asking of him instead of going in a million different directions just trying to keep his body in the right position in the chair or on the floor. The physiology of it all is kind of complicated, but I'm just glad it's helping!

I think that now that he is steady and comfortable walking, he is making some great strides in other areas. This isn't an uncommon way for children with DS (or any children really) to learn and develop. When he is really working hard in one area (gross motor, fine motor or speech), the others may lag behind. But now that he is walking well (and Lord help me - nearly running), he has really come a long with with his speech and fine motor skills. Just this week he was playing a game with his speech therapist and he was correctly identifying three different colors - doing the signs and trying to say the words - and then putting the toy "swords" into very small slots with no trouble. It was quite incredible. Just a few months ago he couldn't even make a pincer grasp or put a peg in a pegboard! He is really trying to talk a lot more. It may not be intelligible to anyone but us, but the fact that he is trying and developing new sounds all the time is like music to my ears.

So my mission now is to keep challenging him. I am trying to create different games so he can identify colors and shapes and we are starting to work on the alphabet. Figuring out what he comprehends and what he doesn't is hard since he isn't talking much yet, but I have seen glimpses that he understands a lot more than I may think he does. So I'm trying to come up with activities that he can do so he can demonstrate what he knows without talking.

My first project is going to be a felt color board of sorts. I plan to make a board with three color pockets on it (probably red, blue and green). Then he can put objects that are the same color in the pocket. We may also try attaching velcro to the back smaller objects so he can stick them on the felt pieces. I am going to make it large enough to hang on the wall at his level. He responds so well to visual cues, that I think this will be the best way for him to work on these skills. Of course we will practice saying and signing the colors as well, but this way he can show us what he knows even if he can't say it. Hopefully it will be a success. I'll post pictures once it's complete!

Finally, tomorrow is the first day of October. To most people this means Breast Cancer Awareness Month and Halloween. But to me, October is Down Syndrome Awareness Month! I am going to attempt to participate in the "31 for 21" challenge again this year. Bloggers who are touched by someone with Down Syndrome attempt to raise awareness by writing blog posts about DS every day in the month of October. If you are interested, I'd love to have you follow along and share your thoughts!