Thursday, October 27, 2011

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!

Wednesday, October 26, 2011

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!


Tuesday, October 25, 2011

Still Failing.

After getting a nice dose of my sweet little boy last night, he decided he would show me his true colors today. Or at least prove that he's got a mind of his own. The morning wasn't so bad, but the evening turned into two straight hours of screeching and flat out refusing to do anything I asked him to do.

I suppose he is a typical three year old in that respect. He refused to eat anything I offered him (but of course ate everything I had put out for him when his Dad fed it to him), told me he wanted a bath but then screamed the entire time, wiggled like an oily piglet when I was trying to get his pajamas on him and threw a fit when I tried to get him to use his inhaler. I couldn't get him into bed fast enough.

So, once again, I feel like a failure of a mother because now neither of my children will listen to me. Please tell me I'm not the only one.



Monday, October 24, 2011

Finding Joy in the Little Things

Raising a child with a developmental delay comes with more than it's fair share of stress and grief. But I have discovered over the past three years that it also brings moments of joy that I never expected. I have learned to look at life and the world around me in a completely different way since Aaron was born.

Tonight as I was putting Aaron to bed, I had a few minutes to think about how lucky I am to have - and appreciate - these moments. His developmental delays can be really stressful because it takes him so long to get past those difficult stages (hitting, biting, screaming. etc) that all kids go through. But I get more of the sweet moments too. He was the happiest, most cuddly baby I have ever seen for at least the first 18 months of his life. And even though he's three now, he's still my baby. I can still rock him to sleep.

And even though it takes him a lot longer to learn those skills that most kids acquire so easily (like walking and talking), when they do come, it's like magic. I really can't describe the feeling I get when he meets another milestone. I was proud of Jacob when he did those things, but you just take them for granted when you have a typical child. You get excited for a day or two and then it's on to the next milestone. But when Aaron learned to sit up, crawl, stand and walk, it was like time stood still. We had waited so long and worked SO hard to make these things happen, it was just an unbelievable feeling when he actually did them. I feel like I have been given a gift because I am actually able to appreciate and cherish these moments because I know how much it took to get there.

There are so many more of those moments with him too. Instead of just focusing on those major milestones, we have dozens of other "smaller" milestones to meet in between those big ones. And each of those are just as exciting and important. They all take work and he can't accomplish the bigger things before he does the smaller ones. All kids have to meet these smaller milestones, it's just that they come easily to typical kids and we don't realize they have even happened.

These moments of joy may not seem like a lot, but I think it's so important to look for the silver lining when life it hard. Raising a child with Down Syndrome (or any developmental delay) may not be easy, but it will always be worth it.

Friday, October 21, 2011

The Magic of Music

A lot of people with Down Syndrome have sort of an uncanny response to music and Aaron is no exception. It is really incredible to watch. The boy has had rhythm since he was an infant and he absolutely loves to dance. He has a "cat" keyboard that plays all sorts of different tunes and he will walk around carrying it and bouncing to the beat. In fact, he has listened to it so many times that he can flip through the songs to get to the one he wants to hear in a matter of seconds. It amazes me that he can figure out how many times to press the button hearing only a fraction of a note and lands on the song that he wants.

He is particularly fond of 80's music and anything with a good beat. If he hears a song that has a good beat, he will come running from anywhere in the house and start dancing and laughing. He loves to watch The X-Factor and American Idol. When he sees and hears people singing on tv, he is entranced.

I have written before about his sensory integration problems and music is one way we deal with it. When he gets difficult or starts to get out of control, if I sing to him, he will usually calm down. It doesn't always work. If he is too worked up, he just gets mad at me, yells and shakes his head at every song I try to sing. But if I happen upon a song he wants to hear and he isn't too worked up, it will calm him down - just like magic. For example, he hates getting into his car seat. He fights me pretty much every time we get in the car. He wiggles and twists his body in unimaginable ways (the low muscle tone and loose joints make that possible) and if it weren't for music, I'm not sure I would ever be able to get him in the car at all. But if I start singing his favorite song, he looks at me and stops fighting. It is amazing.

He loves every kind of musical instrument he can get his hands on. He "sings" into his microphone, plays the drum, the keyboard, the xylophone and anything else he can get his hands on that makes any sort of musical sound.

I love that he already has such a strong love for music. I hope he doesn't lose it. Luckily, chances are pretty good that he won't.



Thursday, October 20, 2011

The Good, the Bad and the Ugly

Today, like most days, was filled with a lot of ups and downs. Aaron had his first appointment with the Orthopedist today ( so that now makes nine doctors he sees). He isn't having any serious problems, we just wanted to have him evaluated to make sure he is learning to walk properly. His leg x-rays were typical for a child with Down syndrome. The doctor we saw has a lot of experience with special needs, his own twin boys have CP. He was incredibly nice (which is actually quite unusual for an orthopedist in my experience) and very knowledgeable. Other than looking at his legs, we also discussed checking him for Atlanto-Axial Instability (AAI). It is a condition that sometimes occurs in people with Down syndrome. Specifically, AAI occurs when the ligaments in the neck are loose, creating too much space between the cervical vertebrae and making it easier for the spinal cord to get pinched between the vertebrae. Obviously that would be very serious if that were to happen. So it is recommended that all kids with DS have neck x rays during early childhood. We'll wait another year or two until aaron is actually able to lay still. Overall, it was a good visit. He didn't recommend any kind of leg braces or orthotics and said we just need to come back once a year! Woohoo! That is the kind of doctor's appointment I like.

Of course the day went downhill from there. After Aaron's nap, we went to Sport Clips so both boys could get hair cuts. Jacob did great but Aaron was having no part of it. We have been there two or three times before and he has gotten a hair cut without any serious issues. But it didn't work out that way this time. Despite all of my best tricks, he cried and yelled the entire time and we left without a hair cut. I suppose the lesson I learned this time is that we shouldn't attempt hair cuts in the evening. Hopefully we can recover from this experience and try again sometime in the next week or two. He definitely still needs a hair cut!

Hopefully tomorrow will be a better day...

Wednesday, October 19, 2011

Prenatal Testing, Abortion and Getting it Wrong

All month I have been trying to sort out my feelings about this topic and deciding what I want to say. Even after all of that thinking, I don't think I'm much closer to the answer, but I figured I would go ahead and write about it anyway.

First, a little background. For those of us who have children already, you may remember being offered the chance to have a quad screen (or something similar) around 16 weeks or so. This blood test "screens" for the possibility of a chromosomal abnormality in your unborn child. It doesn't just test for Down syndrome, it also screens for the possibility of other chromosome problems. Some are far more serious than DS and often result in the baby not surviving until birth. I have always been a proponent of these screening tests because, personally, I want as much information as possible so I will be prepared. I have always looked at it like, if my unborn child is going to have a medical problem, I want to know about it ahead of time so it isn't a shock when the baby is born.

However, my experience didn't work out that way. I had the blood screen done when I was pregnant with both of my kids and both of them came back normal! When my doctor called to tell me the results from the test when I was pregnant with Aaron he said my risk was "slightly higher" than it should have been at my age but not enough to be concerned about. If you are considered "high risk" from the results of this test your doctor may recommend an amniocentesis to give you a definitive answer. I knew going into the test that there are a lot of false positives, meaning women are told they are at high risk just to find out later that their baby is perfectly normal. So in my mind, when my doctor told me everything looked good with the test, I thought it meant there was no chance my baby would have any kind of chromosomal abnormality. Obviously that was wrong.

So to me, the test is kind of pointless now. They told me everything was fine with my baby, none of the ultrasounds picked up anything abnormal and he was diagnosed with Down Syndrome after he was born. We went through a lot of grief after he was born. There's nothing like getting life changing news that you think is completely devastating on what should be one of the happiest days of your life. I know now that the diagnosis wasn't as devastating as it seemed at first, but I still think it would have been easier if we had known before he was born.

On the flip side, a staggering 90% of women who do get a prenatal diagnosis of Down Syndrome choose to abort their babies rather than continue with the pregnancy. This would never have been an option for me and it absolutely appalls me that this number is so high. I understand the devastation and confusion and grief that these women feel, but they don't have the benefit of seeing and holding and bonding with their little angel before they make their decision. Far too many doctors actually encourage women to choose abortion when they get this diagnosis. In my opinion, it's just a lack of education among women and OB-Gyn's about what life is really like for our children and their families. We have Down Syndrome communities across this country working hard to educate people about the benefits that people with DS bring to this world, but the message hasn't reached far enough. No woman should have to be told that there is something wrong with her unborn child and then immediately be asked if she would like an abortion. In that moment of fear and hurt, if that is the only option that is provided to her, she may think that is the only choice. It seems like a dark and unlikely scenario but I know FAR too many people that this has happened to. Instead of being offered an abortion, she should be offered counseling, information about raising a child with Down Syndrome and time to think about what decision is right.

To complicate the issue even more, there is a test that should be available to pregnant women in the next year or so that will diagnose definitively whether the unborn child has Down Syndrome or another chromosomal abnormality though a simple blood test (no amnio necessary) and it will available earlier in the pregnancy. I would like to think it will give families more time to cope with the diagnosis before their baby is born, but in reality, it is probably going to mean the abortion rate is going to increase even more. Without the risk of a miscarriage from the amnio and the ability to detect the disorder earlier in the pregnancy, people will choose to terminate their pregnancies and try again, hoping next time they will get that "perfect child".

Just thinking about that makes me both sad and angry. That so many babies like my son were never given the chance to live and that it will probably get worse in the future.

Having a son with Down Syndrome has really changed the way I look at my children and at the world. When our kids are born (and even before) we start planning and dreaming about what their lives will be like. We do everything we can to help them achieve their dreams. But no matter what we do and what we hope for, none of us knows for sure what the future holds for our kids. You can push your child and give him everything and hope that he grows up to be a doctor, but that doesn't mean it is going to happen. In fact, it's pretty unlikely that it will. I think having Aaron has actually been a blessing because I am able to look at my children and realize that they don't have to grow up to be geniuses that cure cancer, I just want them to be happy. And there is absolutely no reason that Aaron can't grow up to do just that and more.



Tuesday, October 18, 2011

Relaxation, Roulette and Respite Care

My husband and I had the chance to get away from our kids for a few days last week and spent three days in Las Vegas. I have only been to Vegas once before and I was almost 8 months pregnant then, so it was quite a different experience. I had been under some serious stress and really needed to get away so I could just relax. I wasn't so sure that was going to happen in Sin City, but I was pleasantly surprised!

It was so nice to get out of town and not think about anything other than what we were going to eat. We walked around on the Strip, did a little gambling, ate some amazing food, saw a couple of shows and had a wonderful time. I spent one afternoon at the spa in our hotel getting a long overdue massage while my husband won a couple hundred dollars playing Craps in the casino at Caesar's Palace. During my afternoon of relaxation, I spent a lot of time thinking about what I can do to make my life a little stressful when I am home. Organization would definitely help, but it's not enough.

I need to spend more time taking care of myself. This is something I (and a lot of other parents of special needs children that I know) have a huge problem with. I spend a vast majority of my time intently focused on taking care of my children. Just juggling Aaron's schedule alone is a full time job and because I am so emotionally invested in it (for obvious reasons), it takes even more out of me than a regular job would. So I am the one who gets put on the back burner again and again. So often it isn't something that can be helped. Aaron needs a lot and I'm not going to say no so I can go get a massage, that would be ridiculous. But I am going to try to make more of an effort to identify someone who can come help me on at least a weekly basis. If I can get someone to come watch him that I trust and that I know will do a good job taking care of him, I think I could relax a little bit, get some work done away from home, go to the grocery store without getting a migraine headache and not feel like my muscles are contracted into one big knot at all times.

I am starting to look into Respite Care, which is a program offered to families of children with special needs who qualify for Medicaid. I have hesitated to use the service in the past because I just prefer to find babysitters on my own and I feel a little weird about a government program providing me with a babysitter. But the more I talk to people about it and look into it, the more comfortable I am with it. And I think getting away really gave me the opportunity to reflect on it and realize how much I really need it. I'm not exactly sure how many hours we are eligible for, but anything will be better than nothing! I am trying to look at it like I look at finding therapists. Our service coordinator will find people who are willing or able to help when we need them and we will interview them. Once we find someone we are comfortable with, they will come watch Aaron. I plan to stay at home the first several times the provider comes so I can feel comfortable that she is caring for him appropriately. Hopefully we will get to the point where I feel comfortable, trust the person we are using and can leave the house. If we get to this point, I really think it will benefit both me and Aaron.

Monday, October 10, 2011

Ready for a Vacation

My husband and I are leaving tomorrow morning to go on a (much needed) vacation to Las Vegas for three days. I couldn't be more excited. I love my children, but I am worn out - in every sense of the word. We haven't left Aaron for more than one night since he was born, but my mom is here visiting and I know they will be fine with her. I'm afraid she might need a vacation when we get back though!

So, as much as I want to keep this blog up, I might just have to take a break from this for the next three or four days too. I just need to get away, rest and relax. Away from everything. So we're going to Vegas! That makes sense, right?! I really am excited about the trip. Even though there will be lots of other people there, we will have a great time and it will be a wonderful escape from our "real lives".

As we sat at our neighborhood restaurant eating dinner tonight - or should I say, shoveling bites of food into my mouth in between nearly constant attempts at keeping Aaron quiet - I kept thinking about how nice it will be to eat a meal at a restaurant and actually be able to enjoy a conversation with my husband. And eat my food before it gets cold.

I'll let you know what this mysterious thing called "relaxation" feels like when I get back.

Las Vegas Photos
This photo of Las Vegas is courtesy of TripAdvisor

Sunday, October 9, 2011

Well, Crap

So, I made it a week before I missed a day of blogging. Oh well, all I can do is try to get back on track. There wasn't anything particularly difficult about my day yesterday, but somehow I went to bed without even thinking about blogging. Too many other things going through my head I suppose.

I have been thinking about my last blog post and I don't think I really got my point across the way I wanted to. It's not that I said anything untrue, but there is so much more that I wanted to say that just wasn't coming out right that day.

I don't think it's realistic to expect ANY woman to be "SuperMom". But so many of us strive for that and all it does is cause extra stress.

I think this affects moms of children with special needs even more because we are perceived as "SuperMoms" just because of our situations. I don't mean to say I don't appreciate the recognition and validation from my friends and family members when they tell me I am doing a great job raising my children. I really do.

It's kind of a difficult thing to explain. When people say things like "you are doing an amazing job", "I know your life must be so difficult" and "I couldn't do what you do", there is a part of me that feels like I have to try even harder to live up to those perceptions.

I don't feel like a Supermom, most of the time I struggle to feel like a good mom. Believe me, when you try and try and try to get your child to listen to you and they refuse (for far longer than a typical child their age), it can be pretty detrimental to your self-esteem.

I often don't want to accept help with Aaron because I feel like I ought to be able to do it on my own. He's my son, I should be able to provide everything he needs. Regardless of whether or not that leaves me any time to do anything for myself or the rest of my family.

I know this Supermom thing is not unique to my situation. It happens to most of us in one way or another. It's all about "Keeping up with the Joneses", right? (I have always found humor in that saying since it's my maiden name) We think all of our friends are the perfect mothers, fathers, etc, but none of us really are. We all have flaws. I think I need to come up with a slogan that reminds us of that. Something like "Supermom Doesn't Live Here. She Moved to Never Never Land to Live with Santa Clause and the Tooth Fairy." Maybe I'll make myself a sign and hang it in my room.

Friday, October 7, 2011

I Can't Do It All

One of the hardest lessons I have had to learn since I became a mom is that I just can't do it all. I really think there is far too much emphasis put on the perception of the supermom in our society and it's just not realistic. I have tried my hardest, but life can be incredibly overwhelming and trying to be everything to everyone just isn't possible. I think the whole idea is ridiculous to expect of any woman, but is even more difficult for mothers of children with special needs.

I want to give both of my children everything they need to succeed in life. Aaron just needs a lot more than most kids and he probably always will. This can be exhausting but it's often hard to step back and let someone else help because I feel like it's my job to provide everything for him.

I have felt this way frequently over the past three years. When he was first diagnosed with Down syndrome, we learned that the Early Intervention program was available to provide therapy for him. That one wasn't too difficult because I am in the medical profession and I know the benefits that therapy can provide for him that I just can't.

Then we were told we were eligible to apply for Medicaid for Aaron. That one was difficult to accept. Using government assistance was never something that I had even considered. It's hard to swallow your pride and look at the benefits sometimes. But I finally did and what a relief it has been. Aaron has had lots of expensive medical procedures in his life and having Medicaid as a backup insurance has been a tremendous help.
Just accepting help watching my children has been hard as well. Now that Aaron is getting older, caring for him is not as simple as caring for any other child and it is hard to find someone I trust to watch him. My mother is coming to visit next week and I am so excited. Matt and I are going to be able to go away for a few days. It will be the first time I have spent more than a night away from Aaron and the break is desperately needed.

I have a feeling I am going to have to learn this lesson over and over for the rest of my life. I am always going to be trying to "do it all" and will constantly have to remind myself that it's okay if I can't. Really. It's okay.

Thursday, October 6, 2011

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!

Wednesday, October 5, 2011

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!

Tuesday, October 4, 2011

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!

Monday, October 3, 2011

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.



Sunday, October 2, 2011

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.



Saturday, October 1, 2011

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.