That’s So Cliché! -- Guest post by Alysia

That’s So Cliché!
Guest Post by Alysia special needs mom and blogger at Try Defying Gravity

When Hartley told me she was looking for a guest post about siblings, I knew this was right up my alley. I have three boys: Gerry is eight, Howie is four and Lewis is almost two. Howie has sensory processing disorder and autism spectrum disorder. I deal with sibling issues 24/7 and sometimes it feels like we are constantly walking on eggshells as we try to figure out how to best interact as a family unit.

I have learned quite a bit from teachers, doctors and occupational therapists about how to approach our son’s issues and help his brothers better understand how he interprets the world around him. Recently I’ve spent a lot of time thinking about how to best share our experiences. For some reason, I keep coming back to the word “cliché”. Clearly, there’s nothing cliché or stereotypical about our kids with SPD – in fact, the only predictable thing about the disorder is that it is so unpredictable. Every kid with SPD is different. And every family dealing with children with SPD is different.

In spite of all this, I thought it would be an interesting to take some common clichés and expressions and see how it applies to siblings of kids with SPD. I’m no expert, but this is what has worked so far for our family:

1) Nip it in the bud. A few months after my son’s autism diagnosis, the whole family was playing in the front yard. My husband was kicking a ball to Howie and I was chasing the baby around. My oldest was sitting quietly, looking sad. When I asked him what was wrong, he said “I bet no one would notice if I ran away into the woods and never came back. I wish I lived in a different family.” Gulp. It was clear that in our attempt to jump in feet first to help Howie we had neglected to think about how it was affecting our oldest son. It took this moment for him to feel so left out that he was finally able to tell us. It was heartbreaking.

Immediately I put two things into motion. First, I called the school counselor. The fact that Gerry had expressed the desire to run away was scary to me, and I needed her guidance. She met with him to talk about “sibling issues”, and to give him a chance to talk to someone other than family. She introduced him to the words “coping strategies”, and helped him understand that he had to talk with us when he was upset. Having someone on the outside to talk to helped my son put things in perspective, and it gave us a starting point for conversations in the house.

Secondly, we pulled him into the loop. At 8 years old, we thought he was old enough to understand what was going on with his brother physically and emotionally. I bought him two books: Everybody is Different (a book for kids with brothers or sisters on the spectrum) and This is Gabriel Making Sense of School (there’s my plug for Hartley’s book!). We let him read both books alone, and then talked about it with him. We wanted him to understand what was going on with his brother in a way that was caring but clear. My husband said it best: “Howie can’t control what he is doing. If he could stop screaming at loud noises, or gagging on food at the dinner table, or stop running in circles constantly, I’m sure he would. He wants to be like you. But there are days he can’t, and we have to accept that and do our best to understand him”. In addition to the books, we’ve also included Gerry in any private OT sessions we’ve had at the house so he sees what makes his brother “feel better”.

There’s been a lot of success here. I’ll see Gerry spontaneously pick his brother up by the legs and walk him around like a wheelbarrow, or tell him to push him “really really hard!” off the couch, knowing that both activities help strengthen his brother’s muscles. He creates obstacle courses for them with blocks and cushions and has gentle pillow fights with him in the TV room. It’s been amazing to see him “get it” so fast and understand how to incorporate great sensory activities into “normal” sibling play.

2) The grass is always greener on the other side. The “I wished I lived in a different family” statement has come up a few times since that afternoon in the yard. I know that when Gerry is at his friends’ houses, he feels much calmer and freer to play without worrying about his younger brothers getting into the mix. I have learned to swallow my pride and make that call for playdates, just to get him out of the chaos. I’m lucky to have two very good friends whose kids just happen to be my son’s best friends. I know I can call them on any given day and say “Can Gerry come over and play?” knowing that they understand my request. They have graciously taken him to waterslides, playgrounds, beaches and McDonald’s – all places that we can’t always go to as a family. The grass might not really be greener over there, but it sure can be a lot more fun to play on sometimes.

3) Play it by ear. We plan and plan and plan in our house. I have schedules and calendars up so we all know what’s coming next and I try to prepare all three kids in advance (I even find myself telling the baby “first we’ll change your diaper, then we’ll put on your shoes and go in the car” in the same tone I use with the older boys). I do a lot of pre-teaching and advance work to make our outings and activities as sensory-friendly for Howie as I can. But no matter how hard I try to make it all perfect, inevitably something will throw us off track. We’ve worked hard with Gerry to be a more “go with the flow” kind of kid, specifically because his brother isn’t. When we went to the zoo/playground/bowling alley, I told him there was a good chance we might leave at any moment in case of a meltdown from his brother. It has taken a long time, but Gerry finally understands that in some situations his brother just can’t cope like he can. He has even helped to diffuse some major tantrums in the supermarket just because he understands now. It has made family outings that much easier.

4) Practice what you preach. We try really hard to keep a positive environment in the house. I insist that the kids speak nicely to each other, and treat each other with respect. When I hear them saying things like “You’re driving me crazy!“ or “Your noises are so annoying!“ it upsets me. But I know where it comes from. There are some days when it all gets to me. I try very hard to keep my cool around my kids. I try not to yell. But it happens. The constant need to be “on” all the time, the planning, the scheduling, the sleepless nights – it has all added up to some very ugly moments in my house. I’ll say something like “You are driving me nuts!” or “Stop doing that! It is SO annoying!!”. I’m not trying to be hurtful or cruel, but it just comes out. Then I hear it later from one of the kids talking to their brother. And it kills me.

It’s up to me and my husband to set the tone in the house, to teach the kids to be nice to their brothers and be tolerant of each other’s differences. Above everything else, it’s most important that our kids are good people - kind to their friends and respectful. Those lessons start at home, with their brothers, and we have to teach it.

And finally, with all due respect to President Clinton:

5) It’s the family, stupid. Above all else, our family comes first. We need to take care of each other and support one another. My favorite moment of the summer came when Gerry had finally cleaned up his room (after many days of nagging). The tiny Lego pieces were finally cleaned up, permanent markers were put away, and all precious baseball cards were in their rightful place. Somehow, all five of us ended up congregating on his newly clean floor, playing with some old Transformers he had rediscovered. Gerry took a few moments to show Howie how to transform a police car into a robot and back again, and handed Lewis a giant Optimus Prime. The three boys sat together - playing, learning, watching, and laughing. Gerry looked up at me and said “If I keep my room clean like this all the time, can we always be in here together?”

Music to my ears. On so many occasions I feel like our family is between a rock and a hard place, but we plow through it. I know this is just the tip of the iceberg and we have miles to go before we sleep. But there’s nothing more important than keeping my kids happy, healthy and kind to each other. And that’s no cliché.


Jaimee said...

Beautifully written Alysia!

In our family, it's the oldest with SPD and behavior issues, and we often struggle with that being "the example" for two younger, and impressionable, brothers. They copy his language and mimic his threats...still too young themselves to understand that their older brother doesn't have the skills to handle things better, but THEY do, or will (hopefully).

Gerry sounds like such a thoughtful big brother. It makes me want to give him a hug!

Anonymous said...

The primary definition of cliche is - it's true!

Beautiful post of development in a sibling context, Alysia. Pat yourself on the back. Don't be so hard on yourself about yelling (says Ms. Pot to Ms. Kettle).

Barbara (true identity)

K- floortime lite mama said...

WHat a FANTASTIC job you are doing Alysia
I am just stunned by the awesomeness of your kids

Fi said...

I see SO much of my daughter in the things that Gerry says...and it's heartbreaking to witness that as a mother....
Beautifully written post Alysia, you are doing SUCH a fabulous job raising them
Fi :)

~ Kristen said...

What a great post, my oldest is turning 5 soon and I can SEE a lot of what your oldest says in his eyes. Thank you for the look into your family's life and hearts :) great post and advice!

Anonymous said...

Very meaningful post. Fantastic advice. It's always hard to hear your children finally say what's bothering them and it literally breaks your heart when you hear it. Bravo to you for finding a method of bringing all of your children into the fold, and finding different strategies to keep all of your children happy and healthy.

Anonymous said...

Wow! Thank you everyone for such nice comments! I wish I could take credit for my amazing kids, but I think they were just born that way! I can't tell you how much all your nice words and support mean to me. Knowing that you're not going through it all alone is half the battle!
Thank you all and thank you Hartley!