Wednesday, December 18, 2013

Christmas traditions

I have always loved Christmas time, and when I had kids I thought of all the family traditions this season would bring. All the hype, the decorating, the cookie baking, seeing Santa, shopping.

I can think back to the first couple of Christmas' and recall they were smooth, Luke was only 2 when Zach was born and our first family of four Christmas was great. Then Zach got sick and the whole world changed. Zach was in and out of the hospital so much. His entire 2nd year of life was basically inpatient and every holiday was spent in a hospital bed. Not the family traditions I had planned on sharing at all. 
And now even though he is home from the hospital stays we face new challenges with both of them and all the festivities. Now I face the holidays head on with dyspraxia, ADHD, SPD, and many other challenges.

Going to parties and loud stores is too much, seeing Santa is just impossible, shopping is a complete no go with kids and baking cookies involves getting messy, which is not good.
All of the traditions I dreamt of and thought were what I wanted and what was important to my family, my kids, have been replaced. I have learned that my kids are special and what makes them special is the way they see and feel the world.
And our Christmas traditions are now made around them.
-Walking for Make a Wish under the Christmas lights of Tanglewood because Zach was wish kid
-Drinking warm chocolate (because temperature is a Big Deal) with whipped cream, eating popcorn and watching Christmas Scooby Doo
-Watching Santa on TV and cutting out magazine pictures to make our lists (we can't write words yet)
-Finding the Elf on the shelf and telling him what they want from Santa (because Santa is scary in person)
I look at other families and wonder what it's like to be able to stand in line and wait for Santa. I always think it would be nice to have those pictures. But wondering and wishing for the normalcy for my kids doesn't make me love our Christmas time any less.
The season is so much more than those family traditions and the perfect gifts

For me, its about how far we have come this year. How my 6 year old couldn't even write his name 10 months ago but now can sign the Christmas cards. How this year, they love Christmas music and want it played all the time. 
Its about them decorating the Christmas tree, and not thinking how all the ornaments are cluttered together and how there are more candy canes than lights on the tree. 
Its looking at the tree and seeing the most beautiful tree in the world, how its perfect in my eyes. 
And yes it does look like a 4 and 6 year old decorated it,
but I would never want it to look any other way.

When Christmas day comes and my boys wake up to find that Santa has came, and their smiles light up the room, that's how I know its worth it. 

Having a child with special needs is hard and challenging and sometimes all you do is wish for the normal. But then realize that to you they are perfect and no amount of normal could change that.  

And even though I don't have the family traditions I thought I wanted, I have the traditions I love and cherish and wouldn't change for anything.

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Sunday, December 15, 2013

Where we started

When I first started this blog three years ago, it was all about Zach's medical journey. It was my journal for what was happening with him, what the doctors were thinking, my feelings. It was my way to keep everyone updated and as much informed as I could. Along the way it also allowed me to meet some amazing medical parents who were going through some of the same things.
And now three years later, my blog is so much more than just about Zach. It is now the  journey of both of my boys, their special needs, and our struggles. Zach was sick for so long and got so much attention that I never realized Lucas was having problems. But now, after three years I have two special needs boys. And now this blog is about our everyday life.

Being a special needs parent is hard. And sometimes you want everything to be normal and sain, and you sometimes feel how much easier it would be to have "normal" children, and how you feel envious of all your friends for having "normal" families. The ones that you can take anywhere, do anything, and not worry about the noises, or the meltdowns, or the stares. There was no chapter in the expecting book to prepare me for this journey. I have learned along the way how to cope with my children's needs. And believe me, I haven't learned it all yet. There are days that I could pull my hair out or run away. It is hard, it is frustrating, it takes all my energy, my time.
Would I change it?
No way, I love my boys but you don't understand what it is like unless you walk in my shoes.
I am glad this blog has let me reach so many people and meet so many people who are struggling just like me. My goal is for someone to read this and realize they are not alone and that there are other moms thinking and feeling the same way they do.
No one is prepared for the struggle, having a baby period is a struggle and strain but then you throw into the mix, special needs and all the parenting advise flies out the window. The dreams that you had for your child change to fit them. The dreams of the next soccer star turn into the dream that maybe one day they will walk unassisted. The dreams of the next billboard record breaking singer turn into the dream that they will say their first word one day.
You hope that one day they can buckle their own pants, put on their shirt, tie their shoes all on their own.
It's the little things that "normal" families take for granted.
This blog has allowed me to express those feeling as real as I can on here. To show my emotions and feelings for what I want for my children. One day hopefully they will look back and read this and know how big of an accomplishment they are. How proud I am of both of them and how far they have come.
We've already made it so far in three years, who knows how far we will be in the next three.

Not so easy way out

I think sometimes we all want the easy way out of things, whatever that is and however you can do it. The easy way is just better, so we think.
Even with my kids, I sometimes am guilty of this.
Luke had a follow up this week about his inability to produce certain sounds, even though he has been in speech therapy for almost 4 years. And the last time we saw this doctor for this problem, he had discussed surgery in no improvement.
So we saw him again, and he did several tests and then explains that surgery wouldn't help. It's not an easy fix, Luke has oral dyspraxia. He diagnosed him with this last year but in the years time, he hasn't improved. That's not what we wanted. Not to say that we wanted surgery either, but we wanted the easy fix. Not to find out that he simply can't make the movements with his mouth. That maybe after years and years of more therapy and support, he might be able to make a (k) sound or a (g) sound.
And then he might not be able too.
I wish I could just make it better for him, easier, but that isn't what I am supposed to do. It's not my job to make it easy, to teach him to take the easy way out. It's my job to teach him how to cope with life and all the ups and downs it throws at you. Even if it's hard and you struggle. Sometimes there is no easy way out.

Tuesday, December 10, 2013

Blogger Challenge

I'm a part of the
Blogger Challenge!
So along with 400+ more bloggers, twice a month every month in 2014 I will write a new blog post on a chosen topic.
I am super excited about this and the opportunity to read and visit lots of new blogs and to have some fresh ideas for my blog posts.
I love writing about my boys but I am also looking forward to having new topics as well.
So check back every month for new posts!

Wednesday, December 04, 2013


I have been a member of an amazing group on facebook for the past couple of months, called I Run 4 Micheal. (IR4)
It's been called the most inspiring page on facebook. It truly is too, runners are matched up with special needs children to help inspire them. And even if you can't run, dedicating any activity to your "buddy" is amazing. Because it's really not about the running, it's about bringing joy to someone who isn't able to run or maybe even walk. It's about thinking about someone other than yourself, doing this for someone. Something as simple as saying hello and posting a picture, just to let them know you are thinking about them.
Being a mom of special needs children makes me enjoy this group so much more. My kids have special needs and they have struggles but they have mobility, they are more fortunate than others and I teach them that everyday. But I know what they feel when they see others doing something that they can't. And so this group helps that.
It was started by a man who started running and raising money for his friend who had down syndrome and it grew from there. Now there are thousands of runners and even a waiting list to get matched. It is truly inspiring and everyone should sign up.
You can sign up to get matched as a runner or a parent of a special needs child on their website and their facebook page I run for Michael.
"God gave me the gift of mobility. Others aren't as fortunate so I Run for Michael, who do YOU run for?"


In attempts to grow my blog, and reach and help more people, I have set up my own blog social media sites.
Please follow me below to keep up to date on all blog updates and please share with everyone.

Twitter: Crystal @ Rkindofspecial

And any advice from bigger blogger pros would be so helpful and greatly appreciated!

Monday, December 02, 2013

SPD and Winter

So its December,
Its cold and Luke is outside in shorts and a T-shirt. And not due to the fact that the boy doesn't have a dresser full of pants, a closet full of shirts and jackets galore.

Wintertime used to be one of my favorite seasons, I loved snow, the changing leaves, the cold weather. But to live the changing season through the senses of my boy, has me rethinking my love for winter.
He can't help it, he doesn't like the feel of clothing on his skin. Coats and shirts are too scratchy, pants are too tight, socks above his ankles burn his legs, he will hate you for days and cry if you put a coat on him. Its probably one of the hardest things to do, to watch your child feel the world in ways you can't. And the hard part is that he doesn't know he feels the world differently.
We go through this every morning, its exhausting just to get him dressed for school. These are days I long for him to be normal. And not to say that I would ever really want him any other way, I love him the way he is. He is special, he is strong, he is unique. But some days I feel it would be so much easier to just get up and be able to dress him like any other child. Send him to school in a cute polo and some khakis, but that's just not gonna happen. I no longer fight this issue. If he wants to dress in a t shirt when its 30 degrees outside. Then he can, the way I see it, as long as i get him to school in clothes, any clothes, then I won. I accomplished a major milestone for the day and we are one more step to greatness.
I truly hope the seasons get easier for him. I hope the world gets easier for him. But either way he will get through his struggles, even if its in shorts and a T-shirt in 30 degree weather.