November 29, 2011

Staying Out of Their Friendship

Growing up my sister and I were enemies. Not merely bickering siblings, we were the worst kind of advisories, we worked against one another, furiously and with intention to harm, it was a famous hatred that our friends and family knew about well. There was no hiding it. As an adult it's one of those regrets that just stick in my ribs, it's a dull shitty pain that isn't going anywhere, we are fine to one another now-- manage pleasant conversations, laugh, it's nice when we do make the time to talk. She has a cool life, great kids, happy marriage. I enjoy our talks when we have them. But... I'm afraid that we will never be truly close like a brother and sister are meant to be close. It was the kind of damage that can't be undone, we can forgive one another for the past, and we have, but the forgiveness doesn't replace the time we lost, it doesn't forge a bond like: watching out for one another, keeping secrets and sharing whispers, shaking from belly laughs, these are the things that tie you together tightly. Some people want to go back and be a kid again so they can raise hell and eat candy and play all day, I just want to go back and be my sister's friend.

As terrible as that memory is of my relationship with my sister, remembering how sad it made my mother and father is almost more unbearable to conjure up. They wanted us to be friends and love one another so very badly. They pleaded with us. It hurt them. Looking back on things now, I believe that was a big part of the problem, seeing them upset about our resistance to our bond was a lot of power to be wielding as a kid. It was an easy way to get a rise out of them. I was especially bad, it was like blood in the water, if I saw an emotional response to something I did, I went after it. I was a monster. Truly.

Enough about that.

So of course now, armed with lessons learned and my regrets, I have been hyper sensitive to the budding relationship between Tessa and The Littlest Buddy, it's something I keep my eyes on, but my mouth shut about. I promised myself that I wouldn't instruct them that they're supposed to be friends and that they are to love one another. In fact I don't think I have ever suggested it. Cole and I both have taken a real hands off approach to their bonding after LB got over his initial month long freak out that Tessa even existed. We were convinced he was never ever going to chill out. I mean that kid was pissed, top the emotional rage off with the genetic disorder and we were worried. Real worried.

I wonder what Tessa thinks of her brother, how is she coming to understand him, how does learning to communicate with someone who is largely non-verbal work when you're just learning to talk yourself? Would she understand him when he does speak? Would she bite her hand when she got upset as well? Would she tantrum when faced with an unexpected change in the days routine? Does she feel our stress? Will she resent the amount of attention he requires? What does LB think of Tessa, does he understand that she is growing and learning new things every day? Yeah, I could keep writing questions like this for ten pages. There is always too much to think about.

We leave them alone about their relationship. It's their friendship to navigate and nurture, not ours. We enforce the basics, no hitting, no pushing, don't be a jerk, that kind of stuff. I can say for certain, that it has been my greatest joy as a parent so far to see their friendship grow naturally. Cole and I will hear laughter from the other room, and realize they are playing together, they found a way to play. You have no idea what a relief this is. LB's Smith Magenis Syndrome has kept him at a distance from almost all other kids, so why would Tessa be any different? Why would she want to play with him? But she does, it took them awhile, but they have figured out how to make the other laugh. We see kindness from LB constantly towards her. She drops her milk from her high chair at dinner and he gets up to rescue it: "Here ya go Tessa." and she responds, "oh thank you."

This has been a slow build, they pretty much ignored one another for two years. And just recently over the last few months we have seen their little relationship really take off. On the days when LB is at his fathers, Tessa will look for him when she wakes up, and continues to ask for him throughout the day. When she paints she always includes a little blob of paint that represents him, he is always included. Hearing them playing off in another room together literally caves my chest in, it feels so good. I keep this secret from them, I don't want them to know how important it is to me, I am of the belief that kids shouldn't know what's important to us emotionally, because as soon as we take something away from them and it hurts, they will try and do the same to us. Maybe that's not true, but I know that's who I was.

So for now. We have two brand new friends on our hands. And I love it, and I hope that from the love we pour onto them, they will just follow our lead. This all feels so complicated, and simple all at the same time. Right? People say: You just love them with all your heart, sounds simple enough right? But somehow all of this is still freakin hard.


owners of just one iPad, you know things are going good when they are happy to share this thing.


****

A few weeks ago we were driving to my father in laws house, and all of the sudden from the back seat the two of them start playing together. Taking turns being silly. Hearing them play and bond is the best, no matter what they're doing. It was the grossest music to our ears ever....

Total pals.



And of course we know, that this is just funny and beautiful to us.



** I wanted to post this, because for me helping to raise a special needs child it's always comforting to hear about positive and strong relationships amongst siblings. Any time that I see a post where there are strong bonds between brothers or sisters who have special needs I get a great big sigh of relief. For us it is imperative. We need to know that long after Cole and I are gone from this earth, that as an adult LB will have people around him that love him and care for him. It's frightening to imagine him not having anyone. So for anyone that stumbles across this blog from searching SMS, I hope that this post helps a little.

26 comments:

Anonymous November 29, 2011 9:09 AM  

I'm not sure that you were seeking any reassurance, but just in case you were then my husband and his sister are the perfect example of how wonderful the relationship between someone with special needs and her sibling can be. My sister in law is 3years older than my husband and right from being tiny, and to this day, she refers to him as 'hero' (it would melt even the hardest heart). My husband has always treated his sister as 'normal' (sorry, terrible expression but I'm typing this at the end of my lunch hour in a rush and don't have time to think of a better word) so much so that he's never been able to tell me what his sister's diagnosis is. It doesn't matter to him as she's regardless of it all, she's his sister and that's all that matters. I'm pretty sure that he didn't get as much attention as he would have otherwise have done as a child, but, rather than trigger him to demand attention, he's grown up to be the kindest and most selfless person I know. He would protect her to his dying day. I can honestly say that I'm honoured to be married to him and honoured to be part of his sister's life.
Sorry for the rambling comment - too much to say and too little time to say it in (story of my life!)

Francine November 29, 2011 9:14 AM  

My older brother and I used to re-enact wrestling moves on each other in the basement while we watched WWF. Suplex, sleeper hold, half nelson... one time he flipped me over and I landed head-first onto the concrete floor. Got a nice little concussion from that one.

...what was the point I was trying to make?

whitney November 29, 2011 9:21 AM  

My sisters and I didn't get along as kids either... in fact, we still really don't. We still don't have any type of 'close' relationship- so I know how you feel. It confusing to me how siblings can be so close since I don't have any idea what that is like...

Tessa and LB are precious :) In case you needed a stranger's perspective on their adorableness.

Molly Louise November 29, 2011 9:54 AM  

I had to wait 17 years for my sister and I to slowly develop the relationship we currently have (not because we were separated geographically, but because we're 12 years apart and it took that long for me to be able to be relatively on the same page) but there are days when the hurt of being so close to someone who's also hurting badly is something that I could do without.

Siblings can be a mixed bag. And when you know how to hurt someone...it's a scary kind of power.

Tessa and LB will figure it out in their own way what it means to not only be siblings but be friends, too.

cara November 29, 2011 10:00 AM  

Your kids are so beautiful. We're just starting to see a relationship develop between the girls, they're only 1 so it's not *much* of a relationship but it's growing and it absolutely kills me. It hadn't occurred to me not to tell them that they should be friends, being an only child I know bugger all about sibling relationships, but I'll watch myself for that from now on.

jamie November 29, 2011 10:07 AM  

tears in my coffee.

Samantha Chu Ramage. November 29, 2011 10:11 AM  

so adorable and so honest. i love everything you write about your family. i wish you all the best.

xo
sami

isabug November 29, 2011 10:31 AM  

This is a really nice post. (So nice that I'm commenting!)

My dad comes from a family of three and is the oldest with a younger sister with cerebral palsy. She had a rough time growing up (strokes at an early age) but if you look at any of our old photos the joy between siblings is the only thing that you can see. They all loved each other unconditionally, protected each other and continue to do so today.

Violent Delights November 29, 2011 10:36 AM  

It's interesting hearing @Whitney say that she doesn't understand how siblings can be close, because for me it's the opposite. I'm the eldest of 4 and whilst we fight like any other set of sisters and brother, we love each other to death too and I genuinely enjoy spending time with them. It really pleases me too that one of my boyfriend's best friends is his older brother.

I seem to remember you mentioning a long time ago that LB has a brother through his dad and step-siblings, does he get on with them as well as he does with Tessa? Not that it's any of my business of course, I'm just curious and it's nice to think that LB has these siblings looking out for him and being his best friends.

John-Anthony November 29, 2011 11:14 AM  

That was a nice post.

Bee November 29, 2011 12:34 PM  

I'm the little sister of a disabled big brother, who has even more older brothers. An eight year difference and we don't share biological dads. When my parents brought me home he cried and didn't want to come back from his friends house.

So there's a lot of reasons why we wouldn't of gotten on well. Even though all brothers are annoying, there's the fighting, arguing, picking on each other. They grow and relationships become strained as teenagers for everybody.

I don't remember questioning why we were visiting hospitals or why he couldn't keep up with me. I must of asked someone at some point but it clearly didn't impact on me.

I watched him go on a special bus to school and have friends in wheelchairs and I had to be dragged along to places with children who acted differently and looked different.

If anything it taught me more in life than I would of learnt without him. I didn't always like the attention he got, and still gets even at 30! He'll always be my mothers most cared for and her harbouring guilt for his disability.

But she will defend him, she will love him and she will want to protect him from all of those starring eyes and all of those prejudiced voices.

He'll teach her so much just by being. She'll be more tolerant because of him, wiser and smarter, gentler and nurturing. She'll understand difference and be thankful for her loving family.

The way you parent them both will have the most lasting effect on them. Children don't ever wish things were a different way, they just see things as they are and deal with it. They just are.

So glad you're back to posting!

allison November 29, 2011 12:40 PM  

Growing up I met one of my best friends (Lauren) when I was around 4 years old. She moved away when I was 7. And we lost touch. She was a few years younger than me. It was until I was talking to my Mom as a teenager that I realized that she was primarily nonverbal, and Autistic. As a kid I was totally unaware, I remember communicating with her, and I had just found ways around it. We had our own secret little nonverbal language. Kids are so amazing like that.

Leisa November 29, 2011 3:20 PM  

My third child, my son, has Aspergers. He and his younger sister have a beautiful relationship especially. He's always been so nurturing to her and she's patient and understanding towards him - so much so that she is able to reach him and draw him out of himself so much more than anyone else. It's so beautiful to see. Tessa and LB always seem to have a lovely connection in the photos you post of the two of them together. :)

Rachel L. November 29, 2011 4:01 PM  

What a lovely post!

I'm the oldest of four - the youngest of whom, Daniel, has SMS. My brother and sister and I all relate to our special needs sibling differently but we all have figured it out. Danny shares a love of books and jokes with me, a love of holidays and parties with my sister, and - as he's become a teenager - a love of wrestling with my brother.

Though forming a relationship with Daniel has had its challenges, I think that having Daniel in our family is the only reason my other brother, sister and I have a relationship. Our interests and our personalities are very different - no one would guess we're related without being told. We also didn't get along well during our teen years. But the shared experience of being Daniel's siblings has bonded us together in an unbreakable way. Now that we're adults, my brother and sister are my best friends. It's kind of amazing all the ways that a special needs child changes the family dynamic.

I also know that every time your special needs child is shown acceptance - even by their own siblings - it can break your heart with happiness and the fragility of it all. I still see that in my parents.

Anyway - wonderful post. I love your writing.

tim coulson November 29, 2011 4:14 PM  

Beautiful post. I feel and see the love there.

Military Dad November 29, 2011 4:17 PM  

My younger brother and I were 5 years apart growing up, so we never had anything in common. We never really hated each other, but we never really had a bond either. Right now, we live in the same area for the first time in 14 years, and we still only hang out about once a month. It's something I regret, and it's one of the reasons that we decided to have our kids closer together.

I don't know how it turned out so perfectly, but they love each other. The give each other hugs and tell them that they love each other. They have issues sometimes because my daughter is 2 years older and doesn't always understand that her brother doesn't want to do the same thing that she does, but they're great together. I have had the moment where you hear them laughing with each other in a different room, and I will agree that it is tear-inducing.

Excellent post. Thank you.

Caitlin November 29, 2011 8:38 PM  

Beautiful post thanks :) I'm the oldest of five and my brother who is number 4 in the family has down syndrome. He has totally changed and molded my family for the better. He is my favorite person in the whole world I'm so grateful for his contribution to my life. Our youngest sister was a surprise baby but I believe was the best thug that could happen to him. Since she was little she has been his translator in a way because she has always grown up just with him being him and understanding him. The few years where she overtook him developmentally in different areas could have been rough but she just took the opportunity to help him learn right along with her and it was beautiful. Thanks for sharing about your life with lb it always warms my heart!

Elizabeth November 29, 2011 10:39 PM  

How sweet. I enjoyed the audio <3

Marie-Ève November 30, 2011 9:07 AM  

Thank you for this wonderful, heart-warming post and especially this picture. <3

Artemisia November 30, 2011 1:16 PM  

Beautiful post.

My oldest has a disability and although it's been hard on his brother at times, they have always been very, very close. They share everything. When my oldest is home from college, they hang out together.

My husband and I had troubled relationships with some of our siblings as children and before we even knew we'd be dealing with a disability, we talked a lot about how to avoid it.

I'm not sure that telling them they have to be friends matter one way or the other - the problem is when you don't prevent the behavior (hitting, picking on the other, being a jerk, as you put it) that will devolve into cruelty. It sounds like you've done that.

I also found that when I mentioned casually that I was proud they got along and could be taken anywhere, they learned to take some pride in it too. Not a bad thing!

Marie November 30, 2011 1:23 PM  

Ok, Ryan, you couldn't have posed a more gorgeous picture!!!! That shot is unbelievable!!!! From the arc of Tessa's beautiful little arm (looking like something out of a classical painting) to the eway their curls flow together, to the adorable cuddling going on.... OMG. That just stopped my heart for a second, it was so beautiful.

as for the relationship behind the picture... I'm so glad its developing the way it is. I have two younger brothers. They are 14 months apart and shared the same bedroom until they were 18 years old. I am 3 and 4 years older than them. They were always a little team -- a tiny team of terror is how I saw them. When we were little, they mastered the art of Annoy & Divide -- bugging me together, but then splitting up and runing in opposite directions so I could only get one of them.

As adults, our relationships have shifted and changed, and I've gotten much closer to each of them, while I think they've found some individuality and distance from each other. But we're all close. Those are two of my most treasured relationships.

I guess my point is, its wonderful that Tessa and LB are getting along so well now. It seems like they are off to a really great start. But don't freak if their relationship ebbs and flows over the years.

Personally, I think with the amount of love in your house, those kids won't be able to help but love each other. Love is an ever-ongoing action, you know? Not just a sentiment. Its something we demonstrate every day, in tiny little mundane ways. You guys are showing them how to do it with generosity and selflessness.

Lexie, Little Boat November 30, 2011 5:24 PM  

this post almost made me cry. i am one of four and i LOVE my siblings more than anything in the world ... i feel like i would go to the ends of the earth and back if any of them needed me to! it is so nice to hear that LB and Tessa are growing up together as friends and siblings.

Gawee December 1, 2011 2:59 AM  

Ryan, firstly can I say thank you for sharing such a deeply personal part of your past. It’s not an easy thing to do. It’s also nice to hear that you do now have a working relationship with your sister. I know it’s easy for me (or anyone else) to say, but don’t be too hard on yourself for what’s happened in the past. You can’t change the past, only learn from it which you have quite clearly done. We’ve all got stuff in our past that we’re not necessarily proud of!

Maybe I’m channelling my deeply hidden inner hippy self, but I’m a firm believer that things happen for a reason. The reason may not be apparent at the time and the ‘thing happening’ may not be particularly nice or happy, but at some point a reason can be found. It’s something that has helped me through some rather ordinary times myself. A question for you – would you be as passionate about and have the awareness of, letting Tessa & LB find their relationship/friendship had you not experienced what you have? Just something to ponder ;-)

Anyhoo, on a lighter note, I don’t think you guys have anything to worry about as those gorgeous children seem to have it sorted. And I soooo loved the farting from the back seat of the car – it was both hilarious and moving. Again, thank you for sharing a special moment.

Anonymous December 1, 2011 6:36 PM  

Ryan, first off - I miss you on Twitter.
Second off - I totally get what you are saying here.
When I read what you wrote about wanting LB to have grown ups around when you are gone, that love him, well - I sobbed. And I nodded. And I hugged you all from afar. Because I am there, too. And I have wondered, too.

My kiddos are much older - and we DID brainwash them from the beginning "You guys are best friends - you are always going to be. No one will know you better than each other."

But their relationships are solid. They get irritated at her of course, and they want space from her - but at the core is a deep, deep caring and desire to help her.

Anyway, I just wanted to reach out - say hi - say I missed you - say I love your blog. And all that.

xo
Tara Whitney

Alicia R. Ambler December 2, 2011 2:09 PM  

oh. my. god. that audio had me losing it at my desk.
Let 'em be, and be with yourself, too.

Al_Pal February 13, 2012 4:12 PM  

Beautiful photo and post.
My closeness-to-siblings has varied over the years, but I'm sure glad to have them, and to have grown up with them. And have thought about being friends with them late in life. ;p

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