Christmas Eve, Inclusion Style

I have to admit, I have not been in the Christmas spirit this year. It has been difficult having our family separated by 1000+ miles and not being able to spend Christmas together has been even harder than I thought it would be. Throw in multiple illnesses for both kids (and me) over the past couple of months and doctors appointments nearly every week and it's just hard to keep it all together, much less make all kinds of Christmas cheer happen. It also doesn't help that Christmas seems to get more and more commercialized every year and it seems so hard to get through to our kids that it shouldn't be about the stuff you get but about the love you give.

So, I haven't really been in a Christmas kind of mood. However, we did manage to get to the children's service at our church tonight. When my mom told me a few weeks ago that Aaron was old enough to be included in the Christmas play at the children's Christmas Eve service, my immediate reaction was laughter and the thought "that will never work". But then I stopped and thought "if I want him to be included, then I need to take advantage of these opportunities". So we found some sweet girls to be his buddies during the service and went for it.

My sweet baby boy was a shepherd in the Christmas play.

And my big boy was a prophet! 

It did not go off without a hitch of course. He wasn't sure he wanted to go up to the front when it was time. But he did. His buddies came and held his hands and he was there with all of the other preschoolers.

 Then it was his Nana's turn to get up and talk and light the Advent candle, so naturally he wanted to go see her and blow out the candles! He got away from his buddies and I had to go catch him, but it was just Aaron being Aaron.

 He had fun singing songs.

And walking through the congregation as the shepherds went on their "journey".

He tried to eat a poinsettia. (He was not successful, I caught him before he was able to)

He took his costume off and put it back on a few dozen times during the service.

And he made three new friends.

It wasn't a stress free day. Those don't exist for us anymore. But it was an unbelievably emotional and heart warming day that I won't ever forget. It was a day that my little boy got to do what all of the other preschool kids at church do on Christmas Eve. He was there. He was included. He was having fun. 

I wish I could put into words what this moment meant to me as his mother. There simply aren't any. 

Thank you from the bottom of my heart to our friends and family that made this possible. Being part of the Christmas play is such a simple thing for most children, but it was momentous for us. 

A Whole Hand

Tomorrow my baby will be five. A whole hand old. As I think back over the past five years and how drastically different our lives turned out to be than what I imagined, I am reminded of the Robert Frost poem: 

The Road Not Taken

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

I am a writer, but I am not a poem person. I love Shakespeare, the Bronte sisters, pretty much all Brit Lit, and historical fiction, but poems have never really "spoken" to me. However, this very well known poem came to mind for some reason as I was thinking about the road we are now on - the road less traveled. 

People tell you when you have kids that they will change your life - but this isn't what they were talking about. The birth of a child doesn't alter most people's lives so completely that they can never go back to being the person they were before. The birth of our first son didn't do that, but the birth of our second - and his subsequent diagnosis of Down syndrome - did. 

I have written a lot recently about difficulties we have faced and how the grief still hits me, but this post isn't about that. Five years in we have tackled some unbelievable obstacles. Way too many medical diagnoses - just one of which would be hard for many people to cope with. 

But we have also rejoiced in amazing victories. Despite taking longer than most kids, Aaron has learned to walk, jump and he is starting to talk more and more every day. These are great milestones for any kid to reach but when you see how hard they work and all it takes to get them there, the accomplishments and celebrations are so much sweeter. 

Five years ago I knew almost nothing about the special needs world. I certainly never dreamed I would be a part of it. But we have met some amazing people since then. We have learned things about ourselves, our family, our society and our world that we never would have known had we not been forced to walk this road. 

Unlike Mr. Frost, we didn't choose this road for our lives. But there is beauty on this path that I never would have imagined or seen had we not taken it. 

Happy Birthday, Aaron. You are a bright light in an often dark world. You are a spark of joy in a place of hardship. You may not fit the mold that most people expect, but you are so much more than they could ever imagine. I realize now that the dreams I had for you "before" actually pale in comparison to the ones I have for you now. I wanted you to grow up, go to college, be successful, have a family and be healthy and happy. Now I know that even though all of those things may not happen, so much more will. You are going to change the world, my son. You already have just by being in it. You will change lives because of who you are and how you live your life. You live your life full of joy and love and you share it with those around you. Just like we all should. 

Five years ago, we took the road less traveled by, and that has made all the difference. 

Saying the Right Thing

When someone you know has experienced something earth shattering, something that has completely changed their life so that they will never be the person they were before, it is often hard for friends and family to know what to say to support them.

We all have difficult moments in our lives but many people will never have to go through something as devastating as being told your child has a permanent disability, a life threatening illness or actually losing a child. These things change you. They change your perspective on yourself, the world and everything in it. They force you to walk a path you never imagined could have existed, least of all for you and your family.

Every single person I know that has experienced something like this has also talked about how they lost friends or relationships in the process. People in their lives either weren't supportive, couldn't deal with the situation themselves or were outright rude and mean.

For some reason these thoughts have stayed with me recently. I have read many other articles and blog posts about how people deal with the comments they hear. How the cliches don't help and the platitudes don't either. How we all need to try to actually be there for one another instead of just offering "comfort" in the form of a hollow comment.

Tonight I read a post that a friend shared on Facebook that addresses this issue perfectly for me. You should read it too, here's the link:

Alright & Okay

I am not trying to chastise anyone for things they may have said to people in the past. We are ALL guilty of saying these things. When we haven't yet experienced one of these earth shattering events, the cliches sound good. They sound helpful and most of us actually say them with good intentions. But so often they don't help. They minimize the enormity of the pain that we are feeling and make it seem like you think if you say this then all of that will go away and you won't have to feel uncomfortable anymore.

But it's not about you.

It's not about how uncomfortable you feel.

It's about being supportive and doing what you can to let your friend/neighbor/family member know that you are there for them.

The cliches and platitudes won't make the pain go away. No matter how nice they sound. Nothing will. That's right, nothing.

Having a child that has been diagnosed with (multiple) disabilities is hard. When he was born and diagnosed with Down syndrome, I had a new baby that I was completely in love with and had just been told that there was something "wrong" with him that could never be made "right".

No amount of "It will be alright", "God only gives us what we can handle", "God only gives special children to special people" or "You'll be fine, you are so strong" was going to make that better.

When people said those things to me, I heard:

"I couldn't deal with that, so you must be different from me somehow. Maybe if I say these things then she will feel better and I won't have to hear about it anymore"

Even though I KNOW that is not what people meant, it's what it felt like.

(I have a whole other post about why I can't stand the Special Children and Special People comment, if you'd like to read that one.)

The whole point of me writing all of this is not to make anyone feel bad about what they may have said in the past. It's just to get people to try to think a little more before they speak. Offer compassion and real support, not just empty words.

The best thing you can say (in my opinion) to someone that is going through something you really don't understand is "I'm here for you". And mean it. Don't wait for them to ask for your help, just offer or do what you can. Send a text, make a phone call, send a note, bring dinner or just listen. Don't try to wave the pain away, just be the shoulder to cry on.

Say something from the heart, not just something that sounds good.

It's not about looking back and feeling guilty for everything you have done wrong, it's about going forward and being kind.

My Not-So-Sweet Spot

I just read a blog post that several friends have shared on Facebook about one mom's realization that she is in one of life's "sweet spots". An age where her kids are old enough to do many things independently but they are still young enough to share their lives and love with her. It was a very sweet post and many people commented about how well they could relate or how wonderful it was that she was able to realize it while it was happening.

I did not have that reaction. My life does not contain those "sweet spots" and it likely never will. Instead, I have been living with the three-year-long terrible twos that show no sign of slowing down. Don't get me wrong, I can understand this perspective to a degree. My older, typical son is almost 9. Definitely sweet spot age. He wants some independence but not too much. He is starting to become his own person but he still wants to share it all with me. He also talks non-stop, but that's another story.

My problem with the sweet spot is that it isn't reality for everyone. I hear all the time about how we "need to slow down and appreciate our kids and the moment that we're in because it all goes by so fast".  Yeah, yeah, yeah. I know all of this. But sometimes - many times - the moment that we're in sucks. We can look back on it and remember the good things. Somehow the stress or struggles seem to fade but the good memories remain. But when you are in the midst of the insanity, it's difficult to stop and appreciate it. And I'm sick of being made to feel guilty when I can't do that.

I was talking to a friend last night who also happens to have three (!) kids with special needs. We talked about many things that we have in common, many emotions and situations that we have experienced that parents of typical children will never understand. One thing that we discussed that struck me was the emotional toll that CONSTANTLY worrying about your child and his safety will take on you. Try to remember the feeling of following your 1 year old around on the playground when she is just learning to navigate it. You follow right behind her to make sure she doesn't get hurt or fall. Now try to imagine carrying that feeling with you ALL. THE. TIME. It's not just that back of the mind, "oh, I hope she stays safe" feeling.  If that isn't something you can relate to, it's pretty much feeling like you are under the "fight or flight" scenario at all times. You can't relax because you have to be constantly on guard to make sure your child is safe and isn't damaging anything or anyone. My friend's son is 15 now and she still feels that way. It is utterly exhausting. I can't emphasize that enough.

UTTERLY. EXHAUSTING.

We don't get to sit by the pool drinking coffee and watch our kids play with their friends. At almost five, I still have to follow right behind my son to be sure he doesn't dart away and get hurt. Because he will without a second thought. He has no safety awareness at all. It may be something that will come with time and teaching or it may not. He likely will never hit that sweet spot age.

So there it is. My not-so-sweet spot.

At this point, I think if you can enjoy the moment, great. Go for it. And if you can't, give yourself a break. You will look back on it and the tough parts will fade and the good memories will remain.

And if you have read that post, loved it or shared, that's great too! I don't mean to discount that mom's - or anyone else's - feelings about their lives and their children. I just wanted to share mine too.

And here's a cute picture of Aaron to make up for some of my not-so-sweet feelings. He's pretty cute, so that always helps. :-)

I'm Still a Grieving Parent

I have hesitated to write this post for a while because I don't want it to seem like my life is all doom and gloom all the time. I also don't want to offend the friends I have that have physically lost children. But the emotions are there and I feel like if sharing my experience may help someone else understand, then it's worth it. So here goes.

I am a grieving parent. Nearly five years ago, I experienced the most excruciatingly difficult moment of my life when I was told that my newborn son had Down syndrome - an irreversible, "untreatable" genetic condition that would affect nearly every system in his body, delay his development and mean he will need care for the rest of his life. He was diagnosed after he was born. The prenatal tests that we had did not catch it.

Aside from actually losing a child, I can't imagine an emotional pain greater than that which I felt that day. My son was still in my arms yet every part of me felt like I had lost him. Gone was the child I imagined would grow up wanting to be just like his big brother. When we found out we were having a second little boy, we were delighted that we would have two boys to play sports, watch Star Wars with their dad and dream of being superheroes. I had been through this parenting thing already. For almost four years I had been the mom to my sweet little boy that was so excited to have a little brother. We had playdates with friends, he went to preschool and he loved to read books and play on the playground. By the time his little brother was born he was at the point where I could sit and watch him play instead of needing to follow him around. But all of those dreams for his younger brother were ripped away from me when the blood tests came back and confirmed our fears.

The best way I can think of to describe what it felt like is this: It felt like the doctors came to me the day after my beautiful, perfect son was born and told me that he was gone. That he had not survived and they were very sorry. But here was a different baby for me to take home. One that would be completely different from the one I had given birth to and carried for nine months. One that would have different needs and whose life would take a direction that I never could have imagined.

Another way to describe it can be found in Emily Perl Kingsley's Welcome to Holland. Emily is also the mother of a child with Down syndrome. Her story is much more eloquent than mine and helped me through some difficult days. But it isn't our whole story either.

I didn't reject my son after his diagnosis, I loved him desperately and would have done anything to change the path that had just been forced in front of us. I cried over the thought of how children would treat him differently as he grew up. I cried about how much more difficult it would be for him to learn everything that comes naturally to most children. I cried for our older son and how his life would be impacted by his younger brother's diagnosis.

Don't get me wrong, there is a lot of positive information out there about how people with Down syndrome are thriving in society today. We read books and stories that encouraged us and gave us hope. And incidentally all of those things that I thought he wouldn't do, he does (loves to "play sports", play Star Wars and wants to be EXACTLY like his big brother). But that feeling of loss was still there. It IS still there. Every single day I feel it inside me. I lost something that day that will never come back. We'll never be that "typical" family that we thought we would be.

We will give our son every chance and opportunity that we can for him to have a happy and successful life, but it won't be the same life that his brother and peers have. For almost five years our lives have been filled with therapy visits, doctor's appointments, a seemingly-never-ending list of additional diagnoses, endless hours of research, meetings with various administrators and officials who want to talk about everything that is "wrong" with my son and the undeniable feeling that I live in a bubble, looking at a world go by that I'm no longer really a part of.

Watching families and friends enjoying outings, vacations and weekends can be hard. I haven't felt relaxed in five years and don't see any chance of that feeling returning anytime soon, if ever. Parenting a special needs child - at least this particular special needs child - is exhausting. Bone numbingly exhausting. Every. Single. Day.

Don't get me wrong. I adore my son. I love my family. I pray that life won't always be this stressful and exhausting.

But I won't stop grieving. I won't stop longing for what I lost that day. I have met some amazing people that are inside this bubble with me, but I'm not sure I will ever stop wishing I was on the other side. Out there where we always thought we would be.

Light It Up for Autism

I don't talk about Autism as much as I do Down syndrome, but Aaron is one of the many kids out there with a dual diagnosis. Last summer he was diagnosed with Pervasive Developmental Disorder (PDD-NOS), which is one of the diagnoses that puts a person on the Autism spectrum. He doesn't have the social problems that many people with autism experience, but he has significant sensory issues, behavior problems that are more severe than most kids his age, no safety awareness and several other factors that add up to the PDD diagnosis.

Unlike when we got the Down syndrome diagnosis, I wasn't devastated when he was diagnosed with PDD. Quite the opposite actually. Before he was diagnosed, I was frustrated, stressed and felt like I was at the end of my rope with his behaviors and inability to control him. When his Developmental Pediatrician at the DS Clinic in Atlanta discussed his issues with me and gave me the diagnosis I felt a huge wave of relief. There was a name for it. I wasn't crazy. And most importantly, there were things I could do about it.

I still haven't learned nearly as much as I need to about PDD or autism, but I am learning what he thrives on (routine, music and Blue's Clues) and what upsets him (unfamiliar environments and situations and getting overstimulated). Just as with all of his other diagnoses, we learn more every day and we deal with each one as they come. A sweet friend of mine told me when Aaron was born to take things one day at a time and if that was too much, take it half a day at a time or an hour at a time. I have gone back to those words more times than she could ever have imagined and it's truly how I have lived my life since. I don't look too far ahead and when things get rough, as they often do, we just take them an hour at a time.

April is Autism Awareness Month and today, April 2nd, is World Autism Awareness Day. Autism Speaks is encouraging people to "Light It Up Blue" - wear blue, change your FB profile to raise awareness for Autism and participate in awareness campaigns.

The CDC now says that Autism Spectrum Disorders affect 1 in 50 children. It is even higher for kids with Down Syndrome. Nearly everyone knows someone that has been affected by Autism. The more awareness we have, the closer we will come to finding better treatments. We are wearing our blue today - are you?

World Down Syndrome Day 2013

It's the best day of the year! Today - March 21st - is World Down Syndrome Day. Officially recognized by the United Nations and people around the world, 3/21 is recognized as World Down Syndrome Day because the date reflects the most common cause of Down syndrome - three copies of the 21st chromosome.

If you read this blog then you know that my sweet boy was born with Down syndrome. We have been through many ups and downs in the past 4 and a half years but he stole my heart the moment he came into this world and no diagnosis could ever change that.

Last year I wrote about his birth story and a little bit about what we went through when he was diagnosed. If you would like to read about that, you can see that post here: World Down Syndrome Day 2012.

This year I think I'll share something different. When parents get the diagnosis, whether it is before or after their child is born, they are scared and understandably so. No one wants to hear that there is something wrong with their child. It's terrible for most parents when your child has something as simple as an ear infection, just imagine being told that your child has a permanent, life altering disability. Your entire world is turned upside down. You see all of the plans you had made for your future and your child's future going down the drain. It's terrifying. And even now after four and a half years, I still have those moments of fear and grief for the life I thought we would have.

But whenever those moments come (and they are much less frequent than they used to be), I try to step back and look at what we have. We have a beautiful family that is full of love and joy. Isn't that all we can really hope for? It's not always easy, but being a parent is never easy, regardless of any diagnosis your child may or may not have.

So, I'm going to try to dispel a few of the myths some people have about Down syndrome.

People With Down Syndrome Can't Learn
Not true. Yes, Aaron takes longer to learn things than his typical peers have, but that doesn't mean he isn't learning. Just because he doesn't meet the milestones "on time" doesn't mean he hasn't met them and it doesn't mean he won't continue to meet them. He may need more support and extra help but if he has the tools he needs, he will continue to learn and grow and is capable of great things!

People With Down Syndrome Are Always Happy
Umm, no. Although Aaron is probably happier than most kids when he is out and about interacting with other people, by no means is he always happy. He experiences a full range of emotions just like all of the rest of us. BUT, he is usually very friendly, has an amazing smile and laugh and his personality will light up any room. I can't count the number of times people have told me that he has made their day just by smiling at them, blowing them a kiss or giving them a kiss - all of this without being able to talk.  That is something we should all try to celebrate and emulate - not be afraid of.

People With Down Syndrome Are Angels
Similar to the previous paragraph, Aaron is by no means an angel. He can manipulate and throw a tantrum with the best of them. Jacob as a toddler was an angel compared to Aaron. He has shown us why every single child proofing device ever invented is necessary and why there still aren't enough of them. He is a pick-pocket and a flight risk. Then he smiles and hugs and kisses you and you forget all about his devilish ways. He is a child, a four year old with his own personality and a human, just like the rest of us.

People With Down Syndrome Are Sick
This one can be tricky to answer. Down syndrome is not an illness. Just having DS does not mean a person is ill. However, people with DS can be more prone to certain other medical conditions. About 50% have some type of heart defect but that doesn't mean they are life threatening. Aaron had a tiny hole in his heart when he was born (so he is part of that 50%) but it has since closed on it's own. Jacob actually had the same thing when he was born and his was larger and took longer to close - but it has as well. Most people with DS have what is called Hypotonia (low tone), which basically means their muscles are floppier than they should be. This is the reason they take longer to grasp a lot of gross and fine motor skills like crawling, walking, eating independently and even talking. It takes more work for them to use their muscles than it does for people with normal muscle tone. Conditions like Celiac disease, Alzheimer's and even leukemia are more common in people with DS than they are in the general population. But, other conditions such as solid tumors are less common in people with DS. There is even research being done to see why and if the answers could help treat or cure people with cancerous tumors. Isn't that amazing?! You can't tell me there isn't a reason for people with Down syndrome to be a part of this world - they could help contribute to curing certain types of cancer!

Aaron has certainly had more illnesses and medical diagnoses than a typical 4 year old, but even all of those doctors and diagnoses don't mean he is sick. He's sick when he gets a cold or an ear infection but otherwise, he's just a kid who has some medical conditions we have to manage.

People with Down syndrome are more like the rest of us than they are different. They have certain features that may make them look similar but that doesn't make them all the same. They are unique individuals just like we all are. I hope you will take the time to get to know someone with DS and see that they really do have something to give to this world.

Happy World Down Syndrome Day!

Spread the Word

Today - March 6th - has been declared "Spread the Word to End the Word Day". It's a campaign started in part by the Special Olympics to bring attention to the need to eliminate the use of the R word from our vocabulary.


I'll be honest, I have struggled with whether or not I think it's a fight worth fighting for the past few years. The phrases "it's just a word", "don't be so sensitive" and "here come the PC police" all come to mind when talking about this issue. But then I look at my son and I think of the gut wrenching feeling I get every time I hear someone say it or I read it somewhere and I finally decided that it is a cause worth standing up for.

I have no illusions that every person in the world will stop using the word "retard" but I hope this campaign will at least make people stop and think about who it affects when they say it.

The words "mental retardation" started out as a medical term to describe someone with slow mental development. It is one of the primary issues that people with Down syndrome have to deal with. But that doesn't make them stupid.

Let me say that again...people with Down syndrome aren't stupid.

They may take longer to learn concepts than their typical peers, but they are capable of learning. Slow does not equal stupid.

Unfortunately, the R word is thrown around by people in our society to describe everything from a friend who is acting dumb to a machine that isn't working properly. The use of the word in those contexts is bad enough (if only because it's a completely inaccurate use of the word!) but much worse is when it's used as a hurtful insult to someone with a disability.

My son may have Down syndrome but that doesn't mean he doesn't have feelings. It doesn't mean he is immune to your insults or comments. And it definitely doesn't mean he is deserving of them. He is only 4 but already he goes out of his way to be nice to every person he meets. He flashes his infectious smile, blows kisses and gives hugs to everyone he can.

When you use the R word - in any way - it's hurtful to him, it's hurtful to me and it's hurtful to the millions of other people with developmental disabilities and the people who love them. It's time to stop it.

I'm not going to sit here on my high horse and act like I've never said it either. I have and even though I never used it in a way that I thought it would hurt someone that doesn't make it okay. But I don't use it now. And I hope that the next time you think about using it or even the next time it slips out of your mouth (change is hard!) you will think about my son and how that word may affect him and how much he doesn't deserve it.

The Ability to Live

I am sitting in my car with Aaron waiting for my husband, who is talking to someone inside a car dealership. A salesman inside looked at us and the first thing that crossed my mind was "I wonder what he is thinking." The thought didn't last long. I really don't care what he is thinking. But that isn't always the case. Far too often I do care what other people think and I don't think I'm alone. It has gotten better as I have gotten older. Other people's opinions matter less to me now than they used to. But how great would it be if they truly didn't matter at all? If other people's judgements and thoughts about us were completely irrelevant and we could live our lives without worrying about how we "look" to others.

Then it hit me. That is exactly the gift that my son - and most people with Down Syndrome - have been given. You know the saying "dance like no one is watching"? That's what he does. He dances, sings, expresses his emotions and LIVES like he wants to. Like no one is watching. Like he doesn't care what anyone thinks. I know he is only 4 but many 4 year olds have already lost the ability to live like that. And since I have had the pleasure of meeting many older children and adults with DS, I know this isn't something that will go away as he gets older. These people have been given a gift that we all strive for. The ability to live life to the fullest. To see joy in the world. To love other people and treat those around them with care and respect. How many people without DS do you know that blow kisses to strangers and hug everyone they meet? Don't you think the world would be a better place if more of us did that? Or at least greeted others with warmth and a smile?

Society may say that people with DS are disabled. That they are different and should be pitied or worse, never brought into this world at all. But I know the truth. They have something that we should all strive for. They get to LIVE.

And today I am thanking God for bringing this child into my life and allowing me to see that.

Aaron Rocks Out

Aaron loves music. He loves dancing. And, amazingly, his favorite music has nothing to do with Elmo or Blue's Clues!

No, Aaron's favorite group is none other than:

The Black Eyed Peas

So, here's a hilarious video of him dancing to "Boom Boom Pow".

Selective Hearing

Aaron comprehends a lot more than even I realize most of the time. The other day he saw a sticker with the number one on it and he brought it to me and held up one finger! He knew it was a number one! Incredible!

Then we have days like today when he wants to watch Blue's Clues for the 10th time and I tell him "no". But he just looks at me like he doesn't understand me and gets closer to my face and asks over and over again. He sure knows how to play up the "I don't understand card". Stinker.

But don't worry I'm not giving in. I've got his number. 😉

We Have a Talker!

When Aaron was born and subsequently diagnosed with Down syndrome, several people told me that they believed he would grow up to be a great speaker. That he would have an impact on this world. That he would do great things with his life.

Those are all great things to hear when your child has just been diagnosed with a permanent, developmental disability that will alter the course of your life.

I don't know if those things were said to me to make me feel better or because the people who said them truly had a strong feeling that they were right. Whatever the reason though, they have stuck with me over the past four years.

Specifically the one about being a great speaker. It had to do with his name. Aaron is a biblical name. Aaron was Moses' brother who spoke for him when Moses could not.

However, as the years have passed and the words haven't come, I have wondered if there would ever be any truth to those words that were spoken to me back to then.

We have been getting speech therapy since Aaron was just a few months old and all along his therapists have told me that he is doing great and they are so proud of him and he is improving so much. And while I appreciated the praise and encouragement, I couldn't help but think:

But he still can't talk!

UNTIL TODAY!!

TODAY Aaron said "Thank You" to me. He didn't use sign language and I didn't prompt him. He was eating breakfast and I told him he was doing a good job using his fork and he looked at me and said "thank you", then went back to watching Blues Clues.

It actually took a minute for me to register that he had actually spoken to me. Then I almost burst with delight.

To be clear, these weren't Aaron's first words ever. He has been saying "Daddy", "Bubba", "Ball", "Pop", "Papa" and occasionally "Mama" or "Mom" for a while now. But they are just single words.

"Thank you" is a phrase.
It has distinct sounds that differ from each other.
And he didn't sign it at the same time.

All of these are huge breakthroughs for us that for me, pretty much equal the excitement I felt the first time he walked independently.

I don't know if Aaron will grow up to be a public speaker or change society in any dramatic way. But he has already impacted many people's lives and he is going to make a difference. Some how, some way, to someone. Even if it's just me. He already has.

AND NOW HE CAN TALK!!!

I'm Not Special and Neither is My Kid

First, I want to say this post may be a bit controversial and it may even offend some people. If so, I'm sorry in advance. My intention is not to offend anyone, but instead to give you a glimpse into my life and the lives of many other parents of children with special needs.

Just a few days ago, I read a Facebook post from one of my favorite DS parent advocates, Noah's Dad, asking parents to help him with a list of Top Things NOT to Say to the Parent of a Child With Down Syndrome. While I have heard a lot of sentiments that were listed (thankfully, not all of them because some of them were really cruel), one that is repeated very frequently to many of us is this:

"I believe God only gives special children to special people."

Now, if you don't have a child with special needs, I know what you are thinking: "what the heck is wrong with that?!?" Right? It seems nice and complimentary and typically comes from a good place in your heart.

Well, let me tell you why it's not. Even if you mean it in a nice way (and I believe most people do), what it says to me is this:

"I'm glad it's you and not me"

I'm not special. There's nothing different about me or my family. I have two little boys that I do my best to take care of every day. My son who has Down Syndrome has also been diagnosed with Celiac Disease, multiple food allergies, Sensory Processing Disorder, PDD-NOS (which is on the autism spectrum), Asthma, Sleep Apnea, chronic ear infections and several other smaller issues that I can't even think of right now. We go to therapy four times a week, see 10 different doctors on a regular basis and have to worry about things like how to provide him with the best and most inclusive education while also providing the supports he needs. I haven't even had to go to an IEP meeting yet because he hasn't started school, but let me tell you, just the thought of it is overwhelming.

If this is what it means to be "special", I don't want it.

That's not to say I don't want my son. I love him, I would and will do anything and everything for him that he needs. But you would too if he was your child. That's what we do as parents. I'm not any more or less special than you are because my son faces these challenges.

I wish that I could go out somewhere and allow my child to walk next to me. He is almost four years old. But I can't. He will run away from me. He has no safety awareness. He can't communicate with other people. He is cute and friendly and blows people kisses and they all think it's adorable, but they also wonder why he isn't talking back when they speak to him. This isn't what I want for him. I wish I could take him to the playground and talk to my friends while he plays with the other children. But I can't. He will get hurt or run into the street. I wish I could send him to school without agonizing over what environment is best for him and wondering how in the world to trust these strangers that are supposed to be teaching him. He can't talk to me to tell me what is happening at school.

I don't say all of these things to make you feel sorry for me. While raising a child with special needs is challenging, it doesn't make me special. And I truly don't believe I do anything different than any other parent would do.

People can say really cruel things and by no means is this the worst that I or most parents who have children with special needs have heard, but it doesn't say what you think it does to us. It makes it sound like you pity us. And we don't want pity. We want our kids to have the opportunities and acceptance that yours do. We want friends and family to accept us and our kids and give us support when we need it. Although my outlook on life changed when Aaron was born, I didn't suddenly become someone that was more "special" than any other parent.

If my life or my son's life inspires you or makes you appreciate your own kids more, that's great. Tell me that. If you think I'm stronger than you are, you are probably wrong. I get by, I do what I can for my kids and I try to handle it all. Most of the time I feel like a nervous wreck.

I certainly don't feel special.

End of 1st Grade and Georgia Bound!

The end of the school year was crazy as always so now it's been another month since I updated the blog. Oh well! Since the last blog post, Jacob finished 1st grade and we made it safely to Georgia to begin our summer tour.

Jacob finished his school year on May 25th with a very long and difficult day (insert sarcasm here) that consisted of going to the park for two hours and getting out of school at 10:50. He did tell me a few days before school was out that he was sad that school was ending because he loves it. At least I know he didn't mean it all those times he didn't want to go because it was "so boring". :-)

We really did have a good school year. He excelled in all of his assessment areas and we both loved his teacher. We only hope 2nd grade is even better!

After school got out for the summer we had a fun weekend at the Phoenix ComicCon being nerdy. Matt met Lou Ferrigno (the Hulk) and William Shatner, Jacob met Jeremy Bulloch (Boba Fett), and we all met Lavar Burton - who was pleased that we were Reading Rainbow fans! :-)  We all had a great time looking at all of the "crazy" people dressed up in costumes and Jacob even won a Ghostbusters t-shirt in a raffle from the Arizona Ghostbusters! It was a lot of fun.

On Wednesday afternoon, the boys and I began our seven week adventure in Georgia. We had a flight on Southwest that I was VERY nervous about because Aaron screamed for the entire 4 hour flight last year.

I did everything I could to prepare. We had plenty of snacks, drinks, his stuffed puppy dog and the iPad loaded with an entire season of Blue's Clues. Overall, he did great. He yelled (happily) during Blue's Clues several times (if you have ever seen him watch an episode of that show you will know this is not unusual) but I much prefer that to the screaming. He didn't start crying until 20 or 30 minutes before the plane landed and by then he was just sick of being strapped down so there wasn't much I could do to calm him down. But I will take that flight over the last few we have taken any day. Hopefully he is getting more tolerant now that he is older and having the distractions that we did helped. However, I still don't recommend traveling with two small children and all of their stuff alone - it is very difficult. But it will be worth it to be able to visit our family and friends in Georgia for the next 7 weeks!

We are thoroughly enjoying a break from the 110 degree + temperatures that we were experiencing in Phoenix. I'll take the humidity over that insane heat any day.

So, if you're in Georgia and you want to see us this summer, let me know!

Our Food Allergy Journey

As most anyone who knows me knows by now, Aaron (our 3 year old with Down Syndrome), has Celiac Disease and several months ago was diagnosed with a Soy allergy as well. For the past month or so he has been having problems again (difficulty sleeping, change in his behavior, rash on his face and cheeks and a few other symptoms). After having some blood work done (and waiting four days to find out whether or not he might have leukemia - he doesn't, thank goodness!), we went back to the GI doctor this past week to discuss what could be going on now.

We think we have it narrowed down to two possibilities - a milk protein allergy or a corn allergy. Or both! Yippee. Aaron's diet has to be gluten and soy free and we had been avoiding most dairy because I thought he was lactose intolerant (or I thought that's what the doctor had told me when he was diagnosed with Celiac disease). After talking to the nutritionist on Friday, she said he may actually have a milk protein allergy, so he shouldn't eat anything with any dairy in it at all. So that means anything that has been made with any type of milk. So we are supposed to try that for a few weeks and see if it helps. If it doesn't, then we'll move on to eliminating corn.

However, I feel pretty certain already that it's the corn. It could be both, but Aaron is giving me the signals that it's the corn he can't tolerate anymore. He used to love to eat tortilla chips and Fritos, but now he won't touch them. He did the same thing when he developed the soy allergy. He was drinking soy milk all the time before that but when he started having symptoms, he didn't want to drink his soy milk anymore. He's pretty smart. Even though he can't tell me what's wrong, he knows that he doesn't want those things because they make him feel bad.

So that should be fun. He will be on a gluten free, soy free, dairy free, corn free diet. Try looking at the labels on pretty much anything in your pantry and see if those ingredients aren't in them. It really eliminates almost all packaged or processed foods (which isn't necessarily a bad thing, but it's a challenge with a three year old) and any type of baked goods. Did you know if something contains baking powder, dextrose, glucose, maltodextrin or xantham gum, then it contains corn? Yeah, me neither. So, he can eat meat and fresh fruits and vegetables. Well, most vegetables, but not corn. Or anything containing soy (like mayonnaise, vegetable oil, even Pam has soy in it!) For now, he can still eat potatoes and rice.

I am determined not to let this overwhelm me like the other food allergies have. We have gotten used to them and I know we'll get used to this too. It is frustrating that he isn't even four years old yet and his diet has already been EXTREMELY limited. But in the long run, we'll probably all be better off for it. It's not very likely he will have to worry about the obesity that often goes along with having Down syndrome since he won't be able to eat very much food that would cause that problem. So that's a plus! We'll see. If I get really ambitious, I may try to post some recipes that I make that are gluten, soy, dairy and corn free in case anyone else is interested in such a diet. I'm not making any promises though. :-)

Not the Perfect Mom

Have you ever felt like you just can't catch a break? Like every little thing goes wrong all day long and completely ruins your mood and your attitude? Today has been one of those days for me and it's not even lunch time. Unfortunately, I feel like I have had a lot of those days lately and it just plain sucks.

I want to enjoy my family and my children. I want to be the mom that does fun activities with her kids and keeps a (relatively) clean house and has a good dinner on the table for her family every night. Instead, I feel like the mom who is constantly yelling at her kids and trying to get away from them, almost never provides any fun activities that we can all do together and more often than not feeds her kids lunch meat and cut up fruits and vegetables for dinner while I sit and watch them eat. And don't even get me started on what a wreck the house is all the time. I am exhausted at the end of the day (who am I kidding, I'm exhausted by the middle of the day) and I just can't seem to be the person I want to be.

Today, we got up early to take Daddy to the airport because he had to go to Las Vegas for the week for work. I tried to think of things to do with the kids today to keep them busy so we wouldn't be driving each other crazy. Going anywhere is pretty much out of the question because Aaron doesn't like being confined in his stroller and if he's not in his stroller when we are in public, he will run off and make it impossible to do anything. If he is in his stroller, he screams and cries. So, I am left to think of activities we can do at home. I got him a new water table last week and he hasn't played with it yet, so I thought that would be fun and would probably entertain them for an hour or two.

When we got home from the airport, I filled the table up with water and let Aaron play. The first thing he did was try to climb onto the table like he was getting into the bathtub. It's not a pool, so that didn't work, but it didn't prevent him from trying it about 5 dozen times. When he wasn't trying to get into the table, he found the drain plug and promptly pulled it so all the water drained out. After refilling the table (a couple of times), both boys were playing and getting completely soaked (which is fine - that's kind of the point). But of course every few minutes someone would cry or complain about something. Then a bee showed up and ruined the whole activity since Jacob refused to go anywhere near the table after that. (The bee did not sting anyone, but Jacob was stung by a yellow jacket last year and has been terrified of all bees since then) So that was the end of that activity! It lasted all of about 30 minutes.

So we came inside and watched some Blue's Clues and Phineas and Ferb on Netflix. But the dog also decided to pee on the floor next to me and Aaron stuck his hands in it before I noticed it. Once I cleaned that up and washed Aaron's hands, I noticed he had made a mess with his snack all over the walls, so I had to get out the Mr. Clean Magic Eraser to clean that up and while I was trying to do that, Aaron found his water bottle, came up behind me and started dumping his water on my back. Of course this was hilarious (to him). So now, the dog is outside, the boys are in their rooms and I am trying to convince myself that I can make it through the rest of this day. It's not even noon yet.

So I need some help here. I have all sorts of friends who post on Facebook and on their blogs about how great their kids are and the fun things they do together and how they can't wait for summer vacation so they can spend more time together. How do you do it? (by the way, if that's you, I'm not trying to be mean, I really want to know!) How do you enjoy all that time together without losing your mind? How do you do all of these fun things together and cook dinner and have that perfect family? I have been trying but I can't seem to figure it out, so I need some tips. Are you really as perfect and pulled together as you make it look? People tell me all the time that they don't know how I do what I do and sometimes people even tell me I'm a great mom. I feel like I am trying but I am far from a great mom or at least far from the mom that I want to be.

I'm not writing this because I want a pity party (although I realize that is pretty much what it sounds like) and I am not overwhelmed or feeling depressed. I'm just frustrated with the way things are and I want to make it better but I don't know how. So really, if you have any suggestions or tips on how you manage to get things done and actually enjoy your children, I would love to hear them.

FREEDOM!

I like talking about Aaron and his various diagnoses. Not because I like to think about all of his challenges, but because it gives me an opportunity to educate other people about all of these things that they may have never heard of. I have learned so much and done so much research in the past three and a half years and I really enjoy sharing that knowledge with other people. After all, it's the best way to spread awareness, right?

At this point, Aaron has so many diagnoses that it's hard to keep track of them all. I have several notebooks full of medical records and have to keep a file on the computer just so I can keep all of his doctors and therapists straight. At this point (keep in mind, he's only three), he has been diagnosed with Down Syndrome, Celiac Disease, Asthma, Sleep Apnea, a soy allergy, Sensory Processing Disorder, Reflux, Chronic Ear Infections (including three sets of tubes and an adenoid removal) and mild hearing loss. He also sees a cardiologist on a regular basis because he had a hole in his heart (VSD) when he was born. It closed on it's own within the first year of his life but we have continued to see cardiologists on at least a yearly basis for other more minor issues.

However, today we went to the cardiologist for our yearly visit and he said he has no more concerns about Aaron's heart!! Yay!!! He does want us to come back in 3-5 years for one more echocardiogram just to be sure nothing has changed but other than that we are cleared from Cardio!! This might not seem like a big deal to some, but Aaron has a Pediatrician, a Developmental Pediatrician (at the Down Syndrome Clinic in Atlanta), a Pulmonologist, an ENT, an Allergist, a GI doctor, an Orthopedist, an Ophthalmologist, a Pediatric Dentist and a Cardiologist that he sees at least once a year - most of them he sees more frequently than that. And that's not even counting the four therapists he sees every single week! So crossing even one of these specialists off the list is just so wonderful! Obviously I will (and do) take him to whatever appointments he needs but after all we have been through over the past three and a half years, it is amazing to hear a doctor tell me that he is cleared instead of telling me that he has a new, lifelong diagnosis.

Thank you God, for giving us a break today. It has felt like we have had nothing but a string of bad luck lately (and we are still currently trying to figure out his current medical problem, but more on that another time) but today I felt like we got a little relief. And it is oh so sweet. So today we rejoice in being one doctor down. Yippee!

Make New Friends But Keep the Old

Last night we had a visit from an old Air Force friend and his new wife as they drove (moved) from Alaska to Texas. We had a wonderful time visiting with Tony and Karen and it made me miss our ABM family terribly. We had such an amazing group of friends when we lived in Oklahoma and we haven't found anything like it since. That's not to say that we haven't found friends in other places, we have and they are wonderful, but this group is special and they will be a part of our lives forever. We have already been spread out all over the world but I hope that we will somehow, someday live close enough together to actually see each other more than once every 3 or 4 years.

I feel like my life gets so crazy that I often don't have time to stay connected to my friends but visiting with Tony and Karen last night reminded me just how important it is to make the effort. They remind me that life isn't as hard as it feels sometimes and that when it does become too much, my friends are there to support me, no matter how far away they live.

World Down Syndrome Day 2012

Today (3/21) is World Down Syndrome Day. It is celebrated today because of the symbolism of 3/21 - three copies of the 21st chromosome is what causes Down Syndrome.

Down Syndrome is something that is on my mind pretty much every day, but I realize for most people it is not. For that reason, I think days like today are so important. It's one more opportunity to share with the world that Down Syndrome is not a horrible disease and the people who have it don't need to be hidden away in institutions.

The best way that I know how to raise awareness is to share our story. So, even if you have heard it before, I hope you'll take the chance to read it again.

When I was pregnant with Aaron, I had no idea there was anything "wrong". I had all of the testing recommended by my OB (including what was then called the quad screen - which gives you "odds" that your baby will have a genetic abnormality) and everything came back normal. We had several ultrasounds which never showed anything unusual. I have always been a big advocate of having as much information as I can so I will be as prepared as possible. I would never have chosen to terminate my pregnancy if we had known beforehand, I just wanted to know, so I would have time to prepare. But, apparently that wasn't part of God's plan for us.

As it turns out, no one knew that Aaron had Down Syndrome when he was born. My blood pressure went up when I was about 38 weeks and my doctor decided it was best to induce me. I went to the hospital the night before the induction and ended up going into labor before they could start. Labor progressed quickly - so quickly that Matt only made it to the hospital about 20 minutes before Aaron was born and our doctor didn't make it at all. I also didn't have time for an epidural. I never thought I'd be able to give birth naturally, but I did it and I still consider it one of my biggest accomplishments. So a random doctor that happened to be in the hallway delivered Aaron. Everything was fine and we were perfectly delighted with our new little boy.

I have read a lot of stories from people whose children were diagnosed at birth and most of them talk about how all of the nurses and doctors get really quiet and start whispering in the delivery room as soon as the baby is born. It's usually pretty obvious to the medical professionals when a baby is born with Down Syndrome. But that isn't part of our story either. There were A LOT of nurses in our room when Aaron was born but that was because he came so quickly and there wasn't a doctor there until the very end. None of them seemed concerned after he was born. Nobody rushed him out of the room or whispered to each other or looked at us with concern on their faces. No one mentioned Down Syndrome until later that night (he was born around 6 in the morning).

Not long after Aaron was born we were taken up to our post-partum room at Northside Hospital. When the Pediatrician came in to see us that night he is the one that completely flipped our world upside down. It was a doctor we didn't know. Northside has Pediatricians on staff that see the babies and then send their reports to whatever Pediatrician you choose to use once your baby leaves the hospital. So it was this doctor who we had never seen before that walked into our room and told us there might be something wrong with our son. I don't remember a lot of the details of what he said. I felt like someone had shot me when he said he wanted to have Aaron tested for Down Syndrome. I am a nurse - a Pediatric Nurse at that - but I didn't know much about Down Syndrome. I knew that most kids with Down Syndrome were treated badly (by other kids) and kept away from the other students at school when I was growing up and that was enough to make me fear it for my child. So here I am on what should be one of the happiest days of my life (and had been up until that point) with a doctor telling me that my child may have a disability. I think I remember him saying something like "he doesn't have a lot of the features, but I think I want the geneticist to come see him and see what he thinks. I don't think he has it, but let's be sure." It was enough to scare us but we clung to the belief that he thought Aaron didn't have DS. The next morning (at least I think it was the next morning - everything runs together after that Pediatrician came to see us) the geneticist came in to see us. He checked Aaron thoroughly and told us a lot of information about Down Syndrome that I couldn't process at the time and gave us a packet to take home about it. He told us he was on the fence about whether or not Aaron had it and that wasn't typical for him. He had seen thousands of babies and he usually knew one way or the other. Aaron didn't have a lot of the typical features of a baby with DS and to me he just looked like a baby. MY baby.

Getting a diagnosis was as "simple" as a blood test and they said it would be prioritized since he had already been born (meaning it would be looked at ahead of those that were from amnio tests). Of course, since nothing is ever simple for us, they sent the sample to the wrong lab - it went to New York instead of Florida - and it took a week and a half to get the results instead of just a few days. Needless to say, it was the longest week and a half of my life. When we finally got the results and our worst fear was confirmed, I was upset, but not as devastated as I thought I would be. I think by the time we got the official results, we already knew what they would say. That's not to say I wasn't upset. I cried a lot for the first few months of Aaron's life. Friends and family sent congratulations and condolences. It was a very surreal feeling and range of emotions. I wanted to be happy about my new son. And I was. I never had a problem bonding with him and I fought tirelessly to get him everything he needed. Nursing him was VERY difficult, but I was determined and after about two months of trying to nurse, pumping and bottle feeding, he finally got it. Another huge accomplishment for both of us.

The emotions we felt during those first few months are difficult to describe and impossible to understand unless you have experienced it. I gave birth to a beautiful baby boy, but the diagnosis that came shortly afterwards stole from me the child that I thought I would have. We all have hopes and dreams for our children. They typically start before our kids are born. We dream of what they will do, what they will look like and the people they will become. We dream of what their interests will be, the friends they will have, the college they will go to. When Aaron was diagnosed with Down Syndrome, those dreams were shattered. Although I didn't lose my son, I lost the son I thought I would have. And although it seems crazy to anyone who hasn't gone through it, it was a very real grief, one that I probably won't ever fully recover from.

In the three and a half years since Aaron was born, I have changed. I look at the world differently, I look at people differently and I look at myself differently. Although I was utterly shattered when Aaron was diagnosed, I have come out of it thankful for many things. I am thankful that I have already accepted that my children probably won't be the people I dreamed they would be and that's okay. Whatever they do and whoever they are is okay with me, I will love them no matter what.  I am thankful that I have the opportunity to really enjoy and appreciate every accomplishment that Aaron has. They are so much sweeter when you see how hard your kids work at them. I am thankful for the love that Aaron has already spread through the world. He blows kisses and gives hugs to pretty much everyone he meets. His smile lights up any room he is in. The joy and love that radiates from him is unbelievable and unmatched in anyone I have ever met. He may learn more slowly and have to work harder to do things that you and I take for granted, but that doesn't make him less of a person or any less valuable than the rest of us. Down Syndrome is not the devastating condition that I thought it was three and a half years ago. I think if we could all slow down a little and take the time to learn something from the people in this world with DS, we would all be better off.

Pictures of the Boys

We have all been sick lately. Some horrible cold that doesn't want to go away. It gave Jacob and ear infection, Aaron pink eye and has some how made me sick again before I really got over the first bout. We have been a pretty miserable bunch for the past couple of weeks, but I did manage to take the kids outside to take some pictures at the end of last week. I figured I would see what kind of shots I could get with my fancy camera. I'm no professional photographer, but I'm pretty happy with how they turned out. Here are a few of my favorites!