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.

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...

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.

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.

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.


This photo of Las Vegas is courtesy of TripAdvisor

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.

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.