Friday, February 24, 2012

This Is How I Do It: Lana of Along Came The Bird


This is another guest post in the This Is How I Do It series, which features awesome bloggers who have kids with special needs and their survival/sanity tricks.

Blogger: Lana Rush of Along Came The Bird

Her kids: Lily, 5, who has autism and sensory issues; Reagan, 15; and Ryley, 18.

My three biggest secrets to sanity are...

1. My faith. I truly believe that the Lord is what gets me through each and every day. You might have figured out by the ages of my daughters that Lily was a bit of a surprise for our family. God is the One who decided the Rush Family just wasn't complete without Lily Bird. So I believe that she is His kid and He's got an amazing and wonderful purpose for her life. And while I can't think of a better purpose than for God to just "heal" her outright, to open up her mouth and fill it with His words so that we can shout from the mountaintops what He has done for her, He hasn't seen fit to do that. Which only means that His plan for her is even better than that, even better than anything I can ask or imagine. And that keeps me going.

2. Family and friends. My in-laws live right down the road from us and are a wonderful source of help. Lily can be a handful but they're always willing to pitch in with anything from picking her up from school for me, having a "playroom" in their house that's pretty much "Lily-proof," and babysitting. My parents live in Virginia but have a condo here in Austin so they are frequent visitors. My mom is the first one to start in on all those pesky chores that need to be done around the house. And my dad is great for advice—both financial and "how-to," as in how to harass the health insurance company to get what we need for the Bird! He's also great at sending little supportive emails. I've got super friends that I can call anytime and they will literally drop whatever they're doing and come to my aid. I attend two monthly special needs support groups - one at my church for couples and another just for moms. These friends who can laugh and cry with me are an amazing source of encouragement, understanding, and refreshment. My husband, Ryan, is a pastor and our church family truly feels that Lily belongs to them as much as she does to us. They laugh with us, pray with us and feed us! Our church has a special needs ministry that provides one-on-one buddies for the kiddos so that the parents can attend the services. I would not be able to go to church if it weren't for these wonderful volunteers. It truly takes a village to raise a special needs child.

3. My blog and other blogs. I started my blog as a way to let extended family keep up with us. But I soon realized that writing five days a week was incredibly therapeutic for me. I decided I didn't really care if anyone ever read the blog, I needed to write. Then I discovered other blogs, my favorite ones being those written by fellow special needs parents. I started commenting on their posts. They started reading and commenting on mine. And before I knew it, I had all these connections all over the world. And it just became a natural part of my routine to make the rounds and check in with "my people." Several of these bloggers, I truly consider friends and hope to meet them one day in real life. Reading their blogs, keeping up with their families, relating to their joys and sorrows is a daily shot of encouragement.

How I keep track of my child's therapy and medical appointments:

My personal assistant. Oh, I jest. But how I wish it were true! Actually, I use the Yadahome app on my iPhone. I also use the TeuxDeux app for my daily to-do list. But I'm not going to lie... there's room for much improvement in this area of my life. It's not too uncommon for me to still be surprised by something sneaking up on me, like a doctor's appointment. I have found that no app or calendar works if you don't look at it every day. And honestly, some days, I really don't want to look at that calendar because pajama day is never on there!

One way I relax (actually really, really relax) is...

...reading. It's about the only thing that truly makes me forget about life for a little while. Of course, that's assuming I'm reading something in which I am guaranteed to learn absolutely nothing. It's only a relaxing escape if I come out of it having done not one thing to improve my life. And not too much drama. I've got enough of that in real life, thank you very much. My favorite kind of book? Mystery, thriller, suspense. Give me a killer on the loose, a dead body or two, and a person in some type of law enforcement trying to solve the crime before others die and I am a happy woman.

When I get bummed out about something related to my child, one thing that gives me a lift is...

...a nap. I'm not even kidding. Anytime I have a disappointing meeting or hear some unpleasant news or am asked to re-hash Lily's journey from birth to current, I'm fine in that moment. But afterward, I'm almost knocked to my knees by sheer exhaustion. My brain just starts to shut down, like a cell phone running out of charge. A quick nap just does something for me. I wake up feeling refreshed, more optimistic and ready to take on whatever needs to be done.

If it weren't for [fill in the blank], I am not sure I would be able to get through the day.

I'm going to be 100% honest here, folks: my answer is "school." I love my girl with all my heart but let me tell you, she is a handful and a half! She is smart as a whip, fast as lightning, and rarely still. Someone really has to have their eyes on her all day. LIly doesn't attend "real" school so I don't have to fight the IEP fight yet. Her day is made up of ABA, speech therapy, and occupational therapy in a clinic setting, along with natural environment training like you see in a typical pre-school setting—art, music, outside play, circle time, story time, etc... When I get her home in the afternoons, I don't sit down until she's in the bed and even then, I usually make several trips into her room! So yes, I'm glad for school so that I can get some things done around the house, run my errands, and watch a little mindless television while sitting on my fanny before she gets home. Also, a Route 44 Sonic Diet Dr. Pepper with a double shot of vanilla helps... for me, not the Bird!


The way my husband and I split up responsibilities for caring for our child is...

I tend to be the "doer" and he tends to be the "watcher." I get up and get breakfast made, meds distributed, lunch packed, and all of Lily's paraphernalia in her school bag. All this while Lily's lounging in the bed with her dad. Then I get her dressed and Ryan usually carries her to school. If I was super organized the night before, some of this school stuff is already done and we can all lounge in the bed together. Evenings are pretty much the same: I'm cooking supper while he's horse playing with Lily. He sticks her in the shower, I get out the pj's and get her room ready. We all try to lay on the bed for some "chill time" before we tuck her in. It might sound like I'm doing the bulk of the work, but honestly, keeping an eye on the Bird is the harder job! I couldn't do all that stuff if he wasn't with Lily.

The way I deal if strangers stare at my kid or say things is...

By ignoring them, mostly. I guess I should be trying to educate people but if someone approaches me in the grocery store because Lily is having a meltdown and says something ugly or offers "helpful parenting advice", I pretty much think that they don't want to be educated and really, nothing I say is going to make them think my kid needs anything other than a good spanking. They have witnessed something and in sixty seconds, they have made a judgement about me and my family. Rude people are just rude and I don't have time to change them. Thankfully, I've never had anyone approach me like that. I'm much more patient with children who stare at Lily. At her age, they're mostly just curious and honestly don't know what to make of my kid. That I can handle. I'm happy to answer their questions because hopefully, they'll get a little education and not grow up to be rude! Now my husband has a different approach when adults keep staring. He stares right back at them, with this almost maniacal smile on his face. Think the movie "The Shining." Most people get very uncomfortable and look away. And really, if anyone complains about it, what are they going to say, "That man just keeps smiling at me!"

One great therapy technique I recently learned for my child from her therapist that I like doing is...

Massage. Lily is a kid who craves body pressure. She absolutely loves it when I lay on her, covering her whole body with mine. Or when I squeeze her in a good ol' bear hug. So massage is a good way to calm her down and create some body awareness. Now, it's not professional or anything like that. Usually, it's at night after a shower. She lays on her bed and I rub lotion on her legs and arms. She starts off squirmy and ends up finally laying still and relaxed. She gets that pressure she's craving and it's a nice way to end the day. If I could just get someone to prescribe a weekly massage for me, life would be great!

One great site I've found lots of good ideas on is...

...Pinterest. I'll know I'm echoing the masses here but there's just so much great stuff on there! If you want to follow me, I'm www.pinterest/lanalrush. I mostly use Pinterest to find fun things to do and good food to eat. If I'm looking for more medical type information, I go to NIDS, the website of Dr. Michael Goldberg (Lily's autism specialist) and head to the NIDS Yahoo group to talk with other parents of kids like Lily. I find other parents to be the most valuable source of information for me.

I rock because...

I have finally learned my limits and 98% of the time, I live within them. Just like the old saying goes, "If Mama ain't happy, ain't nobody happy," I know that if I get myself overbooked, too busy, and stressed out, the people who suffer the most are the very people I love the most. I want my family to get the absolute best I have to give, not the leftovers. They deserve it.

15 comments:

  1. I'm totally loving your husband right now, Lana... Staring with a maniacal grin? GENIUS!

    Thanks for doing this interview - you always have some great tips and ideas. Glad to find them all in one place!

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  2. See, you have to help me with Pinterest. I get so flustered when I'm there I just back out nice and slow.

    And napping is good. Real good.

    Nice job Lana!!!

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  3. Ellen - Thanks so much for including me in the series. I've discovered some great new blogs through it! And thanks for sharing Max (& Sabrina!) with all of us!

    Karla - My husband is pretty great! I'll have to find the post I wrote about "his look". It's quite alarming...

    Lizbeth - Pinterest is definitely not complete with you! Karla & I will show you the way!!

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  4. Yay Lana! Reading this just blessed me in a way I really needed today. Just to know I'm not alone and to be reminded of who is really in control. We may not understand or even like it, but HE knows what he's doing and who are we to question his love for us? Sometimes I'm just as disobedient and impatient towards my father as a child is with their earthly father!

    Ok...so which one of us is going to make Lizbeth a Pinterest tutorial so we can make sure she's addicted right alongside us? Heehee.

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  5. Great post! And I love that a serial killer doesn't count as "drama" ;)

    As for Pinterest, I'm with Lizbeth. I'm not falling for the hype just yet.

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  6. Oh, Lana! You seem so put together and earth bound. I want to be you when I "grow up"! You inspire me by your honesty and forth coming attitude.

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  7. Lana, this was all sorts of awesome, thank you so much.

    Lizbeth, Here's a great Pinterest beginner's primer from Mashable: http://mashable.com/2011/12/26/pinterest-beginners-guide/

    I'm fascinated with it, too much so—because, you know, I needed another time suck in my life.

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  8. Allie - Thanks so much for your kind words, my friend. And it looks like Ellen is trying to recruit Lizbeth over to the "dark side" aka Pinterest!

    Lisa - Come on, girl! All the cool kids are doing Pinterest!

    Bea - Oh my goodness, aren't you sweet? I'm glad I sounded like I have it together - hanging out at my house might give you a little different picture! :)

    And Ellen - I'm so jealous of you at Blissdom! I've been following your tweets. One of these days, I'm going to get there...

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  9. alright, lana, i'm gonna check out this pinterest thing. i hope there are crockpot recipes, 'cause we got one for christmas this year.

    cheers!

    -j

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  10. Oh Lana I wish you could meet me I am living proof of what you said in the beginning that God has a plan or everybody just the way they are. I am a 20-year-old from South Africa who has Cerebral Palsy - I have raised enough money to build a well in india/africa and I now run my own social media management business. I hope me telling you my story gives you even more hope than you had before.

    Yours truly,
    Nisha

    PS. Lana you and Ryan are great parents your kids are very lucky to have both of you as parents.

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  11. I lOVE Pinterest and I LOVE this post! You can find kid-friendly posts on Pinterest on Kid Blogger Network Activities and Crafts. My daughter is 21 (MR & seizure disorder) and she loves doing many of these art projects (therapeutic processes including massage. http://pinterest.com/playdrmom/kid-blogger-network-activities-crafts/. Kid-Friendly Pinterest: http://pinterest.com/handsonaswegrow/i-m-a-kid-friendly-blog/

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  12. Jon - There are more crockpot recipes than you'll ever be able to cook!

    Nisha - Thanks so much for the encouragement! You sound like a lovely young lady with an awesome testimony - and I wish we could meet! :)

    Susan - Thanks for the info on kid-friendly Pinterest posts. Will be sure to check them out!

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  13. Great insight and advice there Lana ;-)Sounds like you've lots of support and a healthy attitude to it all. Great guest post...well done!

    xx Jazzy

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  14. School is something I cherish, as well. There have been times I have thought about homeschooling, but, really, I don't think we'd make it past minute 1. I try not to feel bad that I look forward to school, but sometimes that mommy guilt does get a hold!

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  15. Oh, forgot to add, I LOVE Sonic (best ice ever!) and I have an off the boat German husband, so he's good at the "look" too ; )

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Thanks for sharing!



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