From Casualty to Champion – My Sisterhood Journey

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This is a contribution from my daughter Elisabeth, on what it was like growing up with a Special Needs Family Member.

My mother told me to read this article on Thriving With Autism and it begins with, “Recently, I posted this tweet: ‘Siblings can be the silent casualty in a family’s battle with autism’”. Before I even got a chance to keep reading, I immediately realized that someone was finally giving me the words I had been trying to find to describe my childhood. Then it goes on to say “One follower was less than thrilled with my use of the terms ‘casualty’ and ‘battle’”, and I was suddenly confused. Did people think the way I felt as a child was truly selfish? This was the battle I had with myself from the time I learned to talk until I was about 14. The true casualty? My self-image.

I found myself really identifying with what Andrea Warner was saying in this article, and to be honest, this is only one of the few times that I have heard someone else’s perspective on growing up with an autistic sibling. My self-growth throughout my teenage years was the only thing that helped me learn to cope with having a sibling that needed not just more attention, but a different kind of attention than I did; a kind of attention that seemed more important to others. Unlike Andrea, though, my parent’s ability to deal with our situation wasn’t the problem.

elisabeth1

When I was in elementary school, I viewed my brother as a social crutch that prevented me from being on the same level as everyone else. I wanted nothing other than to be equal to everyone. I didn’t feel that was possible and I over-compensated for that by trying way too hard to be everyone’s friend. People’s reactions to that did nothing but lower my self-image. For part of the time I was in elementary school, Matthew and I went to the same school. I felt like my school and home lives were becoming too intertwined. I used to introduce people to him by saying, “This is my brother Matthew, he’s weird!” I thought that if people knew that I was already aware of his differences, I wouldn’t get prosecuted for them. Nonetheless, I was outcasted many times not because of Matthew, but because I was socially awkward due to the inward turmoil that arose from my inability to deal with my situation. People didn’t understand me, because I didn’t understand me. I loved my brother, but why did he have to make me different from everyone else? I just wanted to be the same.

elisabeth2

When I got to junior high school, I can remember defending him on countless occasions when he was being bullied, but none of my peers ever praised me for that. If someone my age had just told me that I was doing the right thing, I wouldn’t have felt like I was incapable of truly fitting in. Andrea talked about that in the article, and it makes me sad that we both look back on it as “if only someone had told me…”.But no one else I knew had any idea how to deal with it either. I was going through the hormonal changes that come along with the teenage years, and I felt like it was a hopeless fight to try and be normal.

When I became an 8th grader, I found a friend whose mother worked with “differently-abled” adults, and she really helped me to embrace the situation that life had given me. I finally started to realize that I couldn’t change the way things were. This was my life, and I should be proud of all of the things my brother had accomplished. I realized, mostly on my own, that he has progressed immensely and farther than anyone thought he would have and that’s something to be proud of. My parents had told me these things all along, of course, but they weren’t at my school to remind me every time I felt left out. Their message finally started to sink-in. I had to find myself and allow myself to grow under these circumstances, so that I could be a part of my brother’s growth too.

Going the Distance102208Now I am in college, actively participating in my brother’s life, and I know who I am. I have learned, as everyone does, that fitting in and being the same as everyone else isn’t something to be proud of. Being a good sister to my brother is something to be proud of. And I will never spend another second worrying about what other people think.

 

So as Andrea said,

“’Casualty?’ ‘Battle?’ I stand by my word choices. It’s not like I made them up. I lived them.”

I survived the battle. And I wouldn’t change my situation for the world.

E&M

Learning Independence over Costco Pizza

It’s tough for any parent to step back and let their child fly solo. We know on some intellectual level that in order for them to learn to be self-sufficient, they actually have to do things independent from us. The problem is that as parents we just can’t turn off the emotional part of us that wants, and needs, to protect them from the big bad world.

And when your Child has Special Needs it’s even more difficult. Way, way more difficult.

But just as necessary and just as important.

We often try to do specific activities to teach and help our child become more independent. In reality, it often just sort of evolves. One day you look back and say, hey, look at that, He did that all by himself!

For me, that Ah-Ha moment happened just this week. Matthew doesn’t like to go grocery shopping. I used to “force” him to because it was an opportunity for him to express interest in new foods. If left to his own devices he will just eat pizza, Eggo waffles, hamburgers and french fries. Getting him to go grocery shopping was also an opportunity for him to be out in public in a place that was familiar but not as familiar as home and school. And in a situation that wasn’t completely controlled.

When I first started taking him to Costco, we would make it an event. We’d go shopping and then stop and have dinner at the food court. As Matthew hit his teen years, he went from one slice of pizza to half of a large (or more) pizza. At some point, I really don’t remember when, I started leaving Matthew to finish his pizza while I went shopping. Then I’d meet him back at the food court.

Matthew pretty much keeps to himself and he’s very self-sufficient. He’ll get more water when he wants it. He’ll get his napkins and throw away his trash (routine can come in handy). And Matthew’s brand of Autism means that while he likes to be around people and he’ll respond when spoken to, he’s not going to arbitrarily interact with strangers. That’s a plus – it’s a good self-protection mechanism.

I’m sharing this story with you because I find it helpful to remember these “evolutions” when I’m feeling a bit, um, overprotective. I thought maybe it might help you, too.

The Flip Side of Inclusion

 

NSBC Track Team at 2012 SOSC State Games

Some very Special Olympians – and me.

Awareness.

Acceptance.

Inclusion.

These are terms we hear every day in the Special Needs Community.

There are blogs, books, videos, and movies, all preaching and pleading for inclusion of our Special Needs Loved Ones in the community at large.

But what about the other side of that coin? What about including those who don’t have Special Needs in the Special Needs Community?

I talk about Special Olympics here a lot. My son Matthew has a lot of fun at Special Olympics, he gets great exercise, he makes new friends, and he learns social skills. Special Olympics has been very good for him.

As a coach I have had an opportunity to get to know a lot of people with Special Needs. As you might expect, they want what everyone else wants. They want to be happy.

And happiness is sometimes hanging out with friends, cheering each other on and being recognized for their accomplishments.

Special Olympics makes them happy.

But what about those of us who volunteer? I can’t tell you how many times I have been thanked for volunteering my time, energy and effort to Special Olympics. That’s nice and I appreciate it very much.

Here’s the truth…

I’m the lucky one. I’m the one who is included.

And this kind of inclusion is truly special.

Special Olympics is an opportunity for those with Special Needs to invite us into their world.

And if you are willing to accept that invitation; that incredible gift, you will be transformed.

Every time I go to a Special Olympics practice or an event, or even just put together a video like the one below, I am transformed.

I am encouraged, I am inspired, I feel hope, I feel love, and I feel genuine and sincere inclusion. I am gifted inclusion into their world. Because it is indeed their world.

So for all the talk of awareness, acceptance and inclusion of People with Special Needs into the general community, the truth is that it’s a give-and-take. Yes, people with Special Needs should be included in the community at large. But when they open the door and invite me into their community I am included not because someone preached awareness or pleaded for acceptance but because I am truly welcome.

When we think of inclusion, we need to stop thinking about making some sort of accommodation. We need to stop thinking of it as a challenge. We need to stop thinking of it as a burden. We need to stop thinking of it as a goal.

Rather, we need follow the example of those with Special Needs and learn to include with grace and dignity, genuinely and willingly and not because it’s the politically correct thing to do.

If we can do that the world will be transformed.

If somehow you’re reading this and you have no experience with Special Needs Community, I encourage you to volunteer for Special Olympics not because of what you will give but because of what you will receive.

Trust me, you will receive. You will be transformed.

 

Who Cares? On Judging Special Needs Parenting.

I’ve always claimed I didn’t care what others thought about me but the truth is, I did.

And now I don’t.

Especially my parenting.

I no longer care if other people judge my parenting. And I won’t judge theirs. It took me a looonnnngggg time to get to this place but I can tell you this – if you can let go of caring what others think, people who love and support you will show up in your life.

Matthew Age 6

Matthew Age 6

My Son, Matthew has Autism and went through his “terrible twos” when he was six – with six-year-old size and six-year-old strength. Like many Mothers of Special Needs Children, I too have a story of the temper tantrum in public to share.

I’ll never forget it.

I can close my eyes and see it as though it was yesterday. We had just gone to the grocery store and I was going through the produce section. I don’t know what what set Matthew off, but all of a sudden he was having a complete meltdown. He had been sitting in the basket portion of the shopping cart and was now kicking and screaming as though someone was beating him up. I knew that the more I tried to calm him down the more upset he would get.

There were lot’s of other Moms with their kids shopping at the time; all staring at us and whispering. No really. All of them. Staring and whispering. At my son. At me. At us.

Well at least it felt that way. I mean, here was a child who appeared to be old enough to behave better. My then 7 ½-year-old Daughter was with us so clearly I wasn’t a rookie Mom and “should have known better” than to allow my child to behave in such a manner.

I knew that there was nothing I could do to help Matthew except keep him safe and keeping him safe was not having him try to throw himself out of a shopping cart.

I had to weigh several options

  1. How to keep my daughter safe when she was sitting in the seat of the shopping cart.
  2. Should I try to complete my shopping when Matthew was a whirling dervish in the basket section?
  3. If I chose to leave, how could I safely navigate out of the store and to the car with him kicking and screaming?
  4. Should I just try and find a quiet corner of the store where I could just let it play out?

I chose Option #4.

Amid all the stares from the other Moms and their Kids and all the whispers and all pointing fingers I simply went to the back of the store near where the bathrooms are removed Elisabeth from the cart so she could sit quietly in a chair and then simply let Matthew straighten himself out.

I was sad for my crying child and fearful, trying to protect my other child, mortified and embarrassed and a whole host of other emotions, including angry at the world, at Matthew and at anybody and everybody who I could think of to be angry with.

That afternoon as I watched my Angel sleeping during his nap, I decided that none of those other people mattered. I would not give them the power to embarrass me. I would not give them the power to hurt me. I would not give them the power to make me angry. I would not give them the power to rob me of my peace of mind.

But could I help my Daughter get to this place?

Elisabeth was no longer taking naps at this age so she was having a snack. I went into the kitchen and had a very frank, rather adult conversation with her. I tried to explain her brother to her. I don’t know if she understood. She clearly was not happy with the situation and having to deal with her brother who was, in her eyes, misbehaving didn’t sit well with her. I tried to explain it as best I could and over the years I think she’s really come to understand. I think over the years she’s learned a lot from him in that he doesn’t judge people and he doesn’t care if they judge him, at least on any level that we can see.

I know I’ve learned a lot from him in that regard and I no longer judge people or at least I try not to. And I truly no longer care if they judge me because I know that what they’re judging isn’t me it’s what they’re seeing and their picture is not a complete one.

So judge away world. Who cares?

 

I Think You Should – or Not.

 

Seattle with Space Needle and Mt. Ranier

 

 

Note: This came up in my work with An IEP for Me! and I thought I’d share it with you. As Special Needs Families we often face similar situations. Let me know what you think in the comments.

 

What you can do with Unsolicited Advice

I have a really big goal in my life. I have shared it with some people but recently I’ve been hearing a lot of, “I think you should…” responses.

Now here’s the thing…

No one knows me the way I know me.

  • They don’t see the world through the same lens that do
  • They don’t know what I’ve done to explore this goal
  • They don’t know the research I’ve done
  • They don’t know my likes and dislikes
  • The don’t know what I hope to accomplish with this goal

They only know little pieces of a few pieces of the puzzle.

Now I’m not saying that their advice is unwarranted but it’s not the only option. What they hope I would accomplish by following this advice is clearly something I need to explore, but I have chosen not to explore it the way they are telling me they think I should for several reasons, none of which matter.

The ultimate response though, is that I want to accomplish something and I’m choosing a different path to get there. It’s not a right or wrong path rather it’s the right path for me.

So if I were to listen to them when they say, “I think you should…” I would just abandon my goal because what they’re suggesting is something that I feel is really not possible in my life right now and I feel it’s not something I want to do. But I understand what following their advice would accomplish. If I were to do what they’re suggesting I understand what I would learn but there are other ways to do it.

Truth or Consequences

Often when we hear someone say, “I think you should…” we allow ourselves to be led down a path that is not authentic. It doesn’t serve us personally. Or we say to ourselves, “I can’t do that” and we abandon the goal and our dream.

Maybe what our well-meaning family and friends suggest is a good idea for us or maybe there is a better way that suits our needs and wants in a more authentic way.

I believe that when someone says, “I think you should…”, we can hear what they have to say, think about how their advice may or may not serve us and then choose what we believe will work best for ourselves.

I think you should.

What do you think?