Tuesday, December 24, 2013

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. 

Wednesday, August 21, 2013

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

Sunday, July 28, 2013

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.

Friday, July 26, 2013

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.


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. :-)

Wednesday, July 10, 2013

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.

Tuesday, April 2, 2013

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?

Thursday, March 21, 2013

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!