The More You Know

Knowledge is power. The power to respond, adapt, and grow. Those of you who know me personally know that I'm a bit research crazy. In other words- I like to know stuff. It makes me feel more in control, more able to face just about anything.

About two and a half years ago Diva Girl was diagnosed with Childhood Disintegrative Disorder. I remember going home and Googling and thinking "That's it? That's all the information there is?" because it was the same three to five paragraphs over and over again. The information was brief and the prognosis was grim. For the first time in my life, research had failed me. 

For the most part, we tell people Diva Girl has Autism. The symptoms are similar, they are under the same "umbrella" of disorders, and it's easier for people to understand. We take her to an autism center, all of her friends have autism, and there are even doctors that we see that just consider her a child with autism. But always in the back of my mind there has been this knowledge- she has CDD. We've known that it makes a difference, even without understanding how.

Recently a therapist that has worked with her for a few years told me that after all the kids that she has worked with on the spectrum, Diva Girl is different. She told me it was time to dig a little deeper to find some possible explanations for what we are seeing. So I went home and started looking. And again, research failed me.

I got mad.

And apparently when I get mad I do things that I would NEVER do.

Like email the Yale doctor who is the only one doing research on CDD.

And then call him when he asks to talk to me over the phone.

I thought I was going to hyperventilate. I don't even like talking to people I know on the phone. So talking to a guy who is pretty much THE authority on CDD had me going into full freak out mode.

In the end, I think it is possibly one of the best things I could have ever done for Diva Girl. I finally feel like I understand her, for the first time in over two years. I finally get why she does some of the things she does. I learned about how her brain works and why she has these periods of time when she becomes fearful and emotional.

Knowledge. It's a beautiful thing.

On friendship and farewells

Yesterday I went to a fabulous farewell party for a dear friend of mine who is moving to another state. It will be quite the difference from our current distance, which is a quick walk to the other side of my building. The party was full of good food and old friends that I haven't seen or even spoken to (outside of facebook, that is) in at least a year. In some cases several years. So of course there was hugging, and exclamations over how big their kids have gotten, and lots of "how have you been and what have you been up to?!" And I told them I missed them. I hope they know that it's true.

This particular group of friends knew me B.A.
You know, Before Autism.
They actually saw Diva Girl change right along with me, in some ways. We were in a playgroup and when we started with the group, Diva Girl was a typical little toddler. Then suddenly, I came in week after week, worried about her. I remember watching her around the other kids and seeing how different she was, until it was just too hard to put myself in that position. So I stopped going. And really, the group did end up kind of breaking up our weekly meeting because all of us were busy and kept adding kids and schooling and activities to the mix. But I made no real effort to see any of them, though I counted them as friends.

Towards me, they were absolutely friends. They reached out to me. Brought food after the birth of Rascal and Vlad. Let me know when they thought of me. Donated to BCA, for the kids. Really, some of these ladies did much more than I deserved. And they weren't the only friends I left by the side of the Autism Road. Friends I had from my college days. Friends I had from my time in Memphis. My life was too hard and too busy to nurture friendships, and my focus was so much on myself and my family that I was probably horribly selfish when I did happen to pick up the phone.

When it hit me just how soon my friend will be moving and I expressed how completely sad the realization made me, she said "I know, why didn't we hang out more?!?" And my reply was "I guess we all just tend to take one another for granted, don't we?" Because that's the truth. For well over a year she has been just around the building from me. And I thought, plenty of times, about getting together more. About making an effort. But I didn't.

And I have regrets. She is one of the most genuine, hilariously wonderful people that I've ever had the pleasure of befriending. I should have walked over there more often. Just as I should have picked up the phone more and gotten together more with many other amazing women that I have befriended across the years. The interesting thing is that in the past few weeks I have felt a conviction to reach out to certain old friends, and I've been thrilled with the responses that I've gotten. This is just a confirmation of what I was already inching toward. It is time to make an effort again. It is time to be a friend and not take people for granted.

I know that we all have phases through life and it is natural to grow apart from people, especially when your paths seem to go in different directions. So I don't expect to fill my days with playdates and nights out with every person I've ever had good times with. That's not realistic. But I will drop the ones I miss a note or a call or an invitation. And I will make an extra effort with the friends who have stood by me through everything and really assess what I've been "giving back" lately.

So thank you, my friends. Thank you to the friends who I haven't seen in years but I know still care. Thank you to the friends who have been on my speed dial and supported me through every evaluation and doctors appointment. Thank you to the friends who get my TNU jokes. Thank you to the friends who get my IEP jokes. Thank you to all who have let me be a part of your life, whether big or small, and for wanting to be a part of mine. You are worth an effort.

To Weird and Wacky Friendship!

Hello, New Year!

It may be cliche, but on New Years Eve I am sitting here reminiscing. Most people I know seem to be ready to give 2012 the ol heave ho, apparently it wasn't a good year for them. For a few years I felt the same way. But this year I'm reflecting and thinking....you know, it really wasn't a bad year. Not particularly spectacular, but not horrible. It had its ups and downs. But I'm going to focus on the ups for a second.

-On January 23rd I allowed the kids to outnumber the adults in our home. I had a completely perfect homebirth and joyfully welcomed Vlad into our family.

-Husband and I decided to take a leap of faith and have Husband focus full time on ministry.

-Rascal potty trained. Mostly.

-Diva Girl has started learning how to read. Yay literacy!

-Overall, the kids have made some amazing progress and have made us so proud.

-I went back to doing something that I love and discovering life beyond Autism Land.

Some pretty good highlights this year!
After looking back, I then look forward to the blank slate that is 2013. I usually don't really stretch myself on the resolutions. Typically, I resolve to do something that is pretty much inevitable. Last years resolution was "Give birth!" But this year I am going to push myself a bit. And I'm putting it on here so I can be held accountable!

-I will spend less time with my face in a screen. Between this computer, the tv, and my very addictive phone, I fear my children rarely see my face. Need to change that.

-I will become a Director with BeautiControl and earn a trip to New York City along the way! I'm particularly excited about this one. I also want to help one other wonderful woman earn a trip too! So let me know if you want to help me or go with me, this resolution isn't something I want to do on my own.

-I will cook more. Even if I don't like it.

-I will keep my friendships going strong. I've been reconnecting with people and I don't want to get so wrapped up in my own little life that I forget again how to be a good friend. Friendship is one of the most beautiful gifts that God gives us in life, I don't intend to waste that gift.

-I will date my husband. At least once a month, preferably twice. Gotta keep things interesting!

Ok, I think that's enough to keep me busy this year. Would love to hear your 2012 highlights and 2013 aspirations!

I Believe

It's Christmas Eve. The Christmas lights are twinkling and the presents are under the tree and I have that feeling of contentment in my heart. As I think about Christmas, I find myself thinking about my faith.

I don't often blog about my beliefs, I guess I leave that to my hubs (who writes, quite brilliantly, here) It's probably known to all who know me that I am a Christian. In fact, I'm wife to a Pastor, which still makes me laugh from time to time. I doubt anyone who went to youth group with me back in the day saw that coming. I certainly didn't! Because being a Christian encompasses so much of who I am, I rarely feel the need to write specifically about it I guess. But tonight I'm thinking about Christmas and about the blessings that have been poured out onto my family. And I'm thinking about the families who lost their children so recently, who quite possibly had presents all wrapped and ready for them. And I'm thinking about the conversations that have taken place around me since then. But mostly I'm thinking about believing.

Tomorrow we will wake up and rip open presents in celebration of the fact that a baby came long ago to save the world. When I think about it, it sounds completely absurd, and not just because I know that Jesus wasn't born on December 25th. There are many times that I've sat in church and I suddenly step outside of the fact that I've been raised in this faith tradition and I think to myself- Wow, this sounds completely nuts. If I were someone who just stepped into a church for the first time and heard the Apostles Creed, I would think we were all mad.
 "I believe in God, the Father Almighty,
    the Creator of heaven and earth,
    and in Jesus Christ, His only Son, our Lord:
Who was conceived of the Holy Spirit,
    born of the Virgin Mary,
    suffered under Pontius Pilate,
    was crucified, died, and was buried..."

Yep. Completely bonkers. Then add in all of the bad in the world, all of the evil. How does anyone believe in a God, if this is His grand creation?

Yes, I've thought all of these things. In the midst of the darkest days, when all I could see of my life was the grief of "losing" my children to autism and dealing with multiple miscarriages...I can't say that I never doubted. Sometimes it seems like there are two kinds of Christians- the ones who, in the face of tragedy, grow closer to God and lean on Him for strength, and the ones who question Him and grow angry. I am, apparently, the latter (side note: I've moved past this for the most part, or at least the angry part.) I used to think this made me a horrible Christian, and perhaps not a Christian at all. I've come to believe that it is more of a reflection of my personality. If you know me at all, you know that I question everything, that I am a researching maniac and second guesser. I have a hard time choosing a dinner entree or a parenting methodology. Choosing to get up every day and believe that there is a God who loves me and who gave his son so that I could be saved? Tricky.

But I do believe. I believe that He came, as a baby, as a miracle. I believe that He loves me. I believe that He loves you. I am not nearly eloquent enough to explain all of the reasons why I believe...and tonight I have no desire to. There will always be reasons to doubt. That is why it is called Faith. 

And as I sit here in the glow of the Christmas tree lights, I'm so very glad I believe. I'm so very glad I can rest in the assurance that Christ has come, so that all might have the joy and hope that He brings us, that He brings to me in the midst of the chaos of my life. I believe, I believe, I believe!

Blessed

My mind has been mulling over a lot today, so we'll see exactly what I end up sharing here. I may just go all stream of consciousness and see what comes out. Well....as much as I can, considering I still have children awake.

Mainly, I've been thinking about all of this amazing stuff that has been happening for us. I'm not bragging, I'm honestly still just shocked that so much has been going our way lately. First, you should already know that everything has turned out amazingly well for Diva Girl's school. Since then it seems like one thing after another has fallen into place. A local company has given our kids a Christmas full of gifts that are perfect for them and a friend provided them with gifts for every day of Advent. While Christmas is about much more than presents, we weren't sure if we would be able to do anything for the kids at all this year....and now they have so many presents that we will probably hold some stuff back to give them for their birthdays the next month so they won't be overwhelmed. I'm still in awe.

We have chosen which school we will send Diva Girl to next year and are actually comfortable with it, which is a pretty big deal considering I swore I would never put her in public school. Now we just have to move to the west side of town, which is great because our church is out there too. Which means that we might just get to move to a place that gives our kid a much needed yard to play in! Goodness knows they need some running space.

It just...feels like everything is good right now. I don't experience that very much. Yesterday my therapist actually said, in surprise, "Oh, well, everything seems to be great! What's that feel like?" It made me laugh, and reflect. I realize that for quite a while I've been a "glass half empty" kind of girl. Life has thrown some hard things our way. And while I try to combat that with a lot of humor and laughter, I still tend to have a pretty negative mindset.

If you don't already know, I'm a spa girl. That means that I do pampering sessions for women in their homes, offices, schools, wherever, and I get to use and sell the most amazing products! It is honestly something that I absolutely enjoy and is the one thing that I do that is completely outside of my role of "mommy". I get to escape the house,  And I've met some truly fabulous ladies through it. And these ladies are always sharing their stories of success, and I see them growing right before my very eyes, month after month. But then I always walk away and think to myself...yeah, but that's them. And I'm ME. Good things don't happen to me. Boo hoo.

Gosh, I annoy myself.

The whole reason I started thinking about my blessings today is because of my spa sisters. I really think that God has used them to show me how blessed I am today and how much more he wants to bless me tomorrow, and the day after that, and on and on and on. For the first time in a long time I'm thinking...why not me? Why can't I be successful at something that I love to do? Why can't I bless other women through my business? Why can't I provide for my kids this way?

Today, I just imagine God smiling down on me and saying "Oh honey, I know you've had it hard. But the blessings have come...and just wait and see what I still have in store for you. Keep working hard. Keep looking to me."

Box o Blessings!

Keep on Keepin on

For those of you who haven't already heard the news:
WE DID IT!!!!!!!!

What is "IT"? In a nutshell- We fought the system and won. Diva Girl's therapy is going to be paid for by the public education system. We will even be reimbursed for some of the months that they should have been providing her with services and didn't. Quite honestly, I'm still shocked. This sort of thing just doesn't happen, at least not to anyone who doesn't have loads of money to hire lawyers. Well, that's what I always thought until now.

I've had a few people want to talk over it all with me, they want to know what magic we've worked. The same thing happened after we got ABA therapy through TEIS. They ask for advice and I feel a bit sheepish giving it because the truth is that in many ways we have just plain been blessed. Sure, I can give some basic advice about how we did things, the kind of language we used, etc., but really...I don't feel like some brave warrior who went to battle and won. I feel like a tired old woman who had her prayers answered.

I almost gave up. I almost wanted to walk away and let them get away with completely failing at providing my daughter with what she has a legal right to. Because they seemed so big and strong and completely uncaring. Because it takes money to fight, most of the time, and we are sorely lacking in that department. The stress of it all was wearing on me in ways that are hard to describe. I cried with relief when I realized that we were getting everything she needed.

And even now, in the midst of that relief...in the back of my mind I know that this is a fight that never ends. In January Rascal will be evaluated and we will being the process of dealing with Metro with him. In August Diva Girl will redo Kindergarten in a local school. And there will be more IEP meetings and more fights. That is my job, to speak up for my kids and ensure that they get the services they need and the education that they deserve. Just thinking of it makes me so fully exhausted that I just want to crawl back into bed and hibernate.

So I will push all that out of my mind and try to revel in the moment. My kids are getting what they need, for now, and making spectacular progress! We will keep fighting, as many times as we need to. And I can't help but hope that maybe I can somehow make this battle a little easier on other families in the future. Raising children with special needs is hard enough, we really don't need the added stress of trying to make schools do what they are legally obligated to do. Our kids deserve better than that.

These kids deserve so much more.

"How can I help?"

It's the question that I keep getting asked lately. From people who know me well and from people who barely know me but know about our family. Apparently, I'm starting to look as frazzled as I feel most days!

People tend to apologize to me because they can't help in the way that they think I need help. Yes, we absolutely want people to donate to BCA. Yes, we love babysitters. No, we don't expect everyone to do those things. We don't even WANT everyone to do those things. We don't want friends and family who are themselves struggling to get by, feel like they have to donate triple digits in the name of being helpful. We don't want people who are not "regulars" in our kids lives to babysit (and inevitably struggle the entire night while the kids take advantage of "the newbie"!), as appreciative as we are of those who can and do.

So here is a list of ways that anyone can help us. Some of them take time, some of them take money, and some of them are goofy. But hey...you asked. Ok, maybe you didn't, but still.

- We all know that I'm about 50% caffeine. Coffee makes my world go round. Want to make my day? Get me a white chocolate mocha. It may seem silly, but the combination of coffee and kindness always lightens my load and puts a pep in my step. I've had friends who got gift cards for Starbucks and gave them to me because they don't like coffee, and I swear there is a special place in heaven for those people.

-Coupons. I use them and they help our family more than you'd guess. Just save the inserts from your Sunday paper for me and I will clip em and use em. Your trash (or recyclables) is my treasure!

- Come on over. Bring the kids, they can run around together. Keep an eye out while I do the laundry and write a few emails. Give me someone to talk to while I sweep and take Rascal to the bathroom every 30 minutes of my life. And while you're at it...

- Bring dinner. No, I didn't just have a baby or surgery or any of the other acceptable reasons that people bring you dinner. But cooking is incredibly difficult lately (Rascal hasn't napped and is screaming, Diva Girl is underfoot and requesting chicken nuggets over and over and over, and Vlad is ready for bed and wants me to hold him the entire time or he screams at me. Also, none of my children understand the danger of a hot stove.) so getting to skip that experience is a huge blessing.

- Listen. I really don't think that requires an explanation.

- Gas. We spend a ridiculous amount on gas. Driving to this therapy and that doctor and then to more therapy has put quite a toll on our gas budget. So for Christmas this year, we're asking for gift cards to get gas! Mostly though, just let me know if you see any good deals on gas, or gift cards for gas. Or heck, if you have a good discount on your kroger rewards, just let us pull up behind you and fill er up and we can give you cash. Anything to save on gas!!!

- Prayers. Pray for the kids. Pray for me. Pray for Husband. Pray for our family, for our marriage, for our sanity. I believe that prayer really does make a difference in our lives.

- Give me a call after you declutter. If you are taking things to Goodwill, let me have a shot at it first. We have been SO grateful for the many hand-me-downs that keep our kids well dressed. There are always little things we can use but don't make it into the budget, and I love feeling like I got to go shopping without that pesky spending money thing. Plus, I have such a good time passing those things on when we're done with them.

-Hold the baby. Seriously, my arms are killing me. Just go ahead, next time you see me...play with the baby for 5 minutes and give my arms a break.

- Love my kids. Let them climb on you a bit. Understand if they ignore you. Accept them as they are. It helps, more than you know.

Yeah, that is a pretty good list of ways you can help, if you feel the urge to do such a thing. God bless every person who does even one of these things. Having 3 kids is hard, and when 2 of those kids have special needs....well, I guess that makes it all more difficult. It's just my life, I don't know any difference. But just as much as I can't imagine my kids any differently, I also can't imagine doing this without the help of others. I'm blessed!