Uncategorized

When I don’t write.

I could be wrong. What if I’m wrong? And worse, so much worse, what if they tell me I’m wrong?

I hear these words scream at me as I contemplate writing everything I feel in every moment. They are the words that stop my fingers from pounding out the keys on blog posts that I want to share, but am too afraid. Somewhere along the lines, I began to tell myself that I had to be right to write. I had to know my subject completely and it had to be free from error, even down to the punctuation. Those words I came to believe have stopped me from just telling the story- especially as it happens- for fear that in the future, or even in the present, someone is going to use my words against me. To prove that I was wrong. That I am wrong.

What happened to being wrong? When did it turn into something that was essential for development? When did I suppose that I needed to have the right answers even before the questions came? We all live life in the present. We all make mistakes. I make so many mistakes. I’ve made so many important decisions based on my “gut” emotion or faulty information. That’s life. That’s how we learn and grow. I hope I’m learning. I read what I wrote even a year ago and I roll my eyes at the idiocy. It’s easy to look back. It’s hard to know right now.

That being said, there are some of you who read this nonsense who are light years ahead of me in your development as a human. You roll your eyes at me and how little I understand. Which is so totally fine with me now. I’m learning. I’m not who I was even a year ago, and I don’t expect to be the same person in a year. That’s the magic of growing up.  Life would be boring for me if I knew everything from the beginning. It’s the journey.

So I’m going to write what I’m feeling in the present and I assure you, I will be wrong. I might be right. Either way, I’m desperate to get back to why I started this blog in the beginning- to write. To get it out on paper what I’m going through. When nobody read what I wrote, I didn’t give a damn. I want to not give a damn again. Maybe that kind of writing will take me back to not having anyone read, but my bottom line won’t change. I’ll still be the girl who’s just trying to make sense of the complete and utter nonsense that is her life.

I’m going to write.

Uncategorized

Home?

We did it. We drove five hundred million miles and are in this new place I think we’ll be calling home.

I think.

It’s getting hard to feel like we will ever be settled. Lance did a great job picking out the house. It will… work… for now. Anything was going to be an adjustment after living in a fantasy land in a gigantic home on it’s own acre of land. In this house, well, I could jump from my rooftop to the neighbor’s without much effort. I might try it.

I will write about our whole trip. The fun we had. Add pictures and all of that stuff. For now though, I’m just checking in. I’m a crazy mix of emotions. Mostly just tired. We stopped by our old Port Orchard neighborhood yesterday and saw most of our neighbors. That was SO HARD. I didn’t realize how much it was going to suck to not go HOME to our house, our friends, etc. It’s like starting all over again. Casey cried and said, “It’s just like the good ol’ days!” And then we all cried.

For now, I have a ton of boxes that need to be unpacked and nowhere to put anything because we gave away most of our furniture before we moved. We cleaned out part of our storage shed here that held all of the stuff we didn’t want to take us on our original trip to DC. Holy hell I kept some stupid stuff. Seriously. Boxes and boxes of ugly dumb stuff I will eventually just hide in our crawl space here…which actually is HUGE. That’s exciting to me. A veritable graveyard of projects that I will never finish. Like a warped time capsule museum type thing. I will name it “ADHD.”

I still have no cat.

I miss you guys.

That is all.

Uncategorized

Getting good at starting over.

For the third time in 2 years we’re packing up to move across too many miles to a new home in a new location. When we left Port Orchard two years ago, I was ready. I didn’t want to tell people I was okay with leaving, as if doing so would say that I didn’t want to be around them. For the most part (oh my gosh those four words are so passive aggressive it hurts. Someone call me a whore.), that was completely false. I loved the Port Orchard friends, and I hated leaving knowing that the Navy would upset any hope at good friends being there when we got back. But I was ready. I had felt something more than our financial situation pulling us on the trip. I felt like I HAD to go, that things would change. Miracles would happen. I was ready. I was tired beyond anything I could ever write adequately in words, but ready.

Leaving Washington DC was different. I was sad to be leaving the school that had changed Casey’s world so completely. But I could not wait to get the heck out of there. I had never felt so displaced in my entire life. I went from being in a place where people could care less what you looked like (Think of your stereotypical Seattlite. Tell me you didn’t see someone just a little grungy?) to a place where looks, status, and all of that stuff MATTERED. No one there speaks sarcasm. It’s the only language I’m fluent in.

Today I faced leaving again. As with every prior move, every last inch of my body has ached from the stress of being too cheap to call movers or people to clean for me (Like I could afford that crap anyways). This morning it felt as though my insides were protesting in a way that my outsides longed to, but where entirely too fatigued to do on their own. They kicked, screamed and punched at me as I tried to swallow the bile that rose up sharply when I thought about something being the ‘last time’. My soul longs to settle. I just wish it was here.  I have felt at home here. The people here can come across a little harsh until you realize that it’s quite wonderful to just have people tell you like it is. To strip away pretense, to set fire to the fluff that surrounds too many conversations in other places I’ve been. While it sometimes sucks to have someone tell you ‘no’, I’d much rather have a straight ‘no’ than a wishy washy, I’m-going-to-begrudge-this-later ‘yes’. I love that people would confront me when I had screwed up so we could talk it out and then move on. There is no passive aggression here. It is what it is. I love that.

I picked Abby up from her preschool summer program and cranked up Foo Fighters and rolled the windows down as we pulled out of the parking lot. As I sung along, I was grateful for a passing moment for Abby’s hearing loss. I have a truly terrible voice. The words hung in the air, “Getting good at starting over…where do I begin?” There it was. In my effort to hold back the tears, I did that weird little breathing thing that forces all of the air out of your nose (You know the one, like when you’re in church and your husband leans over and uses the term ‘hard no’ to describe tupperware parties and you have to hold in your laughter and you make a weird little grunting noise through your nose? Is there a word for that thing? It happens to me a lot) and straight up snotted. With that awesome display of maturity, I pulled over and leaned my forehead against the steering wheel and began the first of today’s many ugly cries.  I thought about my friends. My kids’ friends. The hurricane. The snowy winter. The beach. I cried harder as the crappy New England drivers rushed by. I love their terrible driving!  I leaned back in my seat and used the closest Taco Bell napkin to wipe off my face and looked in the rear view mirror at my daughter.

My daughter.

It was her mounting medical bills that forced us to take the position in DC. It was my fear of ever going through that kind of financial desperation again that pushed us to take this position here in Rhode Island.  Her little life has forced me to grow in ways I have never imagined. For our entire family to grow. It wasn’t just me that has gotten good at starting over. In fact, I’m still quite terrible at it,. Better than before, but still sub-par. My boys are great at it. They have been such troopers through all of this. They are great at starting over, but it doesn’t lesson the pain we are all feeling at what we are leaving behind.

As I pulled back onto the road I glanced back as the wind began to blow on Abby’s face. The light from the open sun roof shined right on her, giving her an angelic quality that seemed to embody the way she feels when I hold her. She closed her eyes as tiny tendrils of hair danced across her face. A new, quieter, song gathered around us as we drove by the green pastures that welcomed us to the state just a year ago. The kicking and screaming of my insides slowed down to a manageable tantrum and I was able to allow a little bit of gratitude in.  Grateful for the chance to fall in love with this tiniest of states. Grateful for all of the hardships that forced us down a path we would have never taken on our own. A harder path. A better path. And grateful a little to be going home to a new soggy west coast home and the next round of life.

The moment of gratitude soon passed. I haven’t stopped whining since. Moving blows so much.

Uncategorized

Jinx.

My supertalent is eating my words. Which is super duper great because I have to eat my words all of the damn time. I have love handles from words eaten.

Last week I wrote a post about how awesome I am because my boys don’t whine. I clicked post and Karma was all “Ahahahahahah! She didn’t, did she?! Oh my gosh she did! GET HER!” Immediately my boys began to whine and have not stopped since.

I deserved that.

It’s tempting for me to see what else I can jinx. I talked to my Jinxism mentor, Greta the Amazing, the other night. I told her that I should say that I’m really awesome at being poor so I could get Jinxed and be rich. She’s very wise and came back with, “No. You would have to say “I’m so happy I’m poor.” Any word that indicates a positive emotion of peace and joy is your ticket. Especially when it comes to your children. In your sentence “I’m really great at being poor” will end up at you not being great at being poor. Thus, you will STILL be poor and completely suck at it. You’re welcome.”

I’m really happy I’m poor. I’m really happy I’m poor. I’m really happy I’m poor.

Uncategorized

Let my sons see your boobs!

My oldest was born 6 weeks premature. He was on a ventilator and then oxygen at first and spent the first few weeks of his life in intensive care. During that time, I pumped breastmilk the prescribed 8 times a day in preparation for when I’d be able to nurse. I marveled at this new thing my body could do. That I could provide all of the nourishment my son needed right there in my two, now freakishly enormous, breasts.  I hated pumping. I was excited for when he got home and I could just nurse him. Turns out, I hated nursing too. After about a month I just couldn’t do it anymore. When my second son was born, I gave it a try again thinking that I’d love it if I didn’t have a sick baby. I hated it even more. I really really loved bottle feeding my babies. I loved that Dad got to help. It was the right choice for me and my family.

Many didn’t and still don’t feel that way.  I had people CRY when I told them I had quit nursing. I had people tell me that formula was poison and later, someone even went so far as to imply that Casey’s autism was a result of the formula. Because that’s what every new mom needs, right? People to dump all over her for the choices she makes? This whole debate cuts both ways though. Every week it seems like I hear another horror story of a woman being told to cover up while she nurses or leave the establishment she’s in.  If I’m being honest, I’ve been one to say that women who are nursing in public should do it discreetly because I don’t want my boys to see THAT.  I was very wrong. Just as I needed support for my decision to not nurse, nursing mothers need support and acceptance of their choice TO nurse.

I didn’t want my boys to see someone’s boob, even if there was a baby’s head covering most of it. I thought it was wrong. It’s not wrong. Breasts are not bad. If I teach my boys that they are something only to be used for sexual purposes, that’s the only way they will see them.  If I can teach my children that it is natural, beautiful and necessary for women to feed their children this way, I hope that’s what they will come away with.

So I’m asking you, let my sons see your boobs. Okay, so maybe I’m being a little tongue in cheek here. I just never want a woman to feel badly about having to feed their child in front of my boys. I want this to be a normal, natural thing for them. They didn’t get that from me because I chose not to nurse.  Feeding your baby is a bonding time. Along with being held close they need to be able to LOOK at you and to hear your voice.  Mothers who choose to nurse should be celebrated for this, not discouraged.

In the end, what matters most to me is that women get the support they need and deserve in whatever choice they make that is best for their whole family.

Uncategorized

I need your help again.

Hi. This isn’t a real post. I wish I had more time to do this up right, but I don’t have time- because they don’t have time.

Last year while living in Virginia I got to meet two remarkable people. They were in the process of trying to adopt a child from Russia. The little girl’s name is Charolette and her parents could not wait to get her. Adopting from Europe is crazy expensive. It takes multiple trips to the country, and you have to spend varying amounts of time there.  Charlotte was in a great “baby house” (orphanage), but it wouldn’t have been long before she got transferred to an institution. You see, Charlotte has Down syndrome. In Russia and many other Eastern European countries children with Down syndrome are put up for adoption more often than not. These kids “age out” of the orphanages around five, and then are sent to live in adult mental institutions. Many of those institutions are lacking in medical care, adequate staffing and worse.  Much worse.

I don’t want to get into much more of that. It makes me hurt to even think about a child like Abby going through that.  Anyways, I met the Dirke’s after I posted about wanting to adopt a child with Down syndrome. A little girl named Elizabeth. She lives in Russia and I could not stop thinking about her.  I spoke with Kelly about this right before she went to get Charlotte. She came to find out that the gorgeous girl that I had dreamed about was in the very same baby house as her daughter.  It was nothing short of unbelievable. It was good to find out that Elizabeth was in good hands for the time being. We started to explore adopting her and quickly came to the conclusion for many reasons that it was just not something we could do. I was heartbroken.  A few weeks later after much stress and fundraising, the Dirke’s brought home Charlotte. When I first met her she was tiny and shy. Within a month she was a different kid completely. She’s going to school and loves cats as much as I do. The Dirke’s became a family with her adoption.

charlotte-and-mama-7-19-12

 

I told Kelly about how sad I was that we wouldn’t be able to adopt Elizabeth to which she replied, “Then I will.” They quickly made plans to go back to Russia and adopt not one but two more children.

Then that retched Vladamir Putin made that impossible.

We ALL were devastated. I cried hard for her, and still think about her a lot.

I can’t imagine the Dirke’s grief. I simply cannot fathom it. They were just months away from adding two more girls to their family.  I spoke with Kelly and we held out hope that the law would change.  The people of Russia flooded the streets in protest. But it was not to be. For now, all we can do is help with the efforts to educate the Russian people about children with disabilities. I have friends who go in and help reform the education system there and push for inclusion for children with special needs. Hopefully the right’s movement there will take hold as it has here. It’s up to the people of Russia now.

The Dirke’s were back to square one. With broken hearts, they realized that though they couldn’t get their girls in Russia, there were many more children waiting. They found Louisa, a baby born with Down Syndrome and living in Eastern Europe. They’ve been fundraising for a while now and leave to go meet her next week. I’ve been so out of touch with the world that I didn’t realize the time was coming so soon, nor did I know that they were at a loss for funds until today.

Today I came across this picture:

1002881_10201565283324254_1318904899_nI thought, “Oh my gosh that is a beautiful ring…” then I clicked on the image to see that it was my friend Kelly’s, along with this message:

“Six years ago, on my 24th birthday, my now husband knelt down in front of me and asked me to marry him. Ever since that night, I’ve proudly worn the ring that he picked out for me. It (and my wedding band) are the only pieces of jewelry that I wear.

And I hate to see it go.

But we’re up against a fundraising deadline. We leave in SEVEN days–we need funding in THREE so the money has time to transfer. Funding that we were anticipating has not come through for us.

It’s just jewelry. Louisa’s life is more important than a ring.

For every $20 donation you make to our FIG grant with Project Hopeful or our FSP with Reece’s Rainbow, you will receive one chance to win the ring. Sharing this post on FB or Twitter gives you a free chance to win. We need 500 donations of $20 to reach our fundraising goal.

Donation receipts can be emailed to ringforlouisa@gmail.com.

Our FIG fund with Project Hopeful: http://projecthopeful.org/matched-families-2/ (scroll all the way to the bottom to Louisa’s family)

Our FSP with Reece’s Rainbow: http://reecesrainbow.org/?s=Stori

You guys, she’s willing to give away her WEDDING RING to go get this girl.  She’s willing to give everything it takes to save this child’s life. And though she’d never in a million years say it, she’s a hero. She’s my hero. I didn’t choose to have two kids with special needs. She is. She’s choosing to take on children others would not. And she’s giving everything she has for the opportunity.

We can’t let her do that, can we? Can we show her that she can keep her wedding ring and fill the empty seat at her dinner table? Can we  help her bring home a baby sister for Charlotte? We can’t all go and adopt waiting children, but we can help the people who are. Please please help me. If you can’t donate,  you can still share. You can still pray, send good vibes, whatever you believe in for this family. For those of you who saw my status on my Facebook page and donated or shared already, thank you so much. I cried when I saw how many people had said they helped out.

To learn more about this family visit their blog: In Mama’s Heart

To see some adorable pictures of Charlotte taken by my friend Megan visit: My Stubborn Little Miss

*This is not a forum to call into question why they would choose to adopt internationally rather than from the US. All children deserve a home. Period.

family

How to get your kids to stop whining.

My boys don’t whine. They don’t. It’s the one damn thing I think I might have gotten right in this whole parenting world*. They fight. They punch each other (in fact, last night Carter started WAILING on Casey in the car. Brother punches, not angry punches. As he was doing it, Casey was laughing to the point where his voice was cracking and he could barely breathe. In between giggles and gasps he said, “I…deserve…this!”) they complain, but they don’t EVER do it in the whiny voice that makes me stabby.

I’ll tell you why I think they don’t: We have a zero tolerance policy to whining. It started out with my complete abhorrence to whining. I can’t stand the sound of it. It’s like mouth sounds- there’s nothing I can do. I hear it –  I get angry.  Kids use whining as leverage. Parents HATE it and will do anything to get them to stop. It’s human nature to employ methods that generally work. So if whining EVER works, your kids are going to keep using it.  Here’s what to do to shut down whining in your life in two simple steps:

1. Say to the whiner, “I’m sorry. I don’t understand ‘Whine.’ Please talk to me in your regular voice.”

This takes the leverage away from the bag-of-violent-cats sound that is a child’s whine. It lets your child know that you are still interested in what they are wanting, still open to conversation, but it gives clear terms as to how that conversation will be had. If the child continues to whine, move on to number 2.

2. Shut it down.

If they continue to whine for whatever reason, shut. it. down. My kids know that if they whine because they aren’t getting what they want they will IMMEDIATELY have that thing taken away. Whining because you can’t get on the computer? No computer then. Whining because I won’t make you Mac N’ Cheese again? You’ll be making yourself a sandwich for lunch today.  You might have to go to some crazy lengths at first to prove the point: Whining does not win with you. Not just this once. Not ever.

Kids are smart. They get what works with you at an early age and employ that as necessary. If the sound of their whine makes you give in, they’ll do it. If you don’t give in for a half an hour, they’ll learn to just whine longer. You can’t give in.

If this doesn’t work, don’t come whining to me. I don’t speak Whine.

b23c9212b00f11e291e622000a1f9d57_7*Abby will be the girl to make me eat my words. She’s cute. She’s cuddly. She’s spoiled rotten. Stay tuned for a redaction of this message.

autism · Down syndrome

10 things I wish I would have done as a special needs parent from the beginning.

WheParenting children with special needsn Casey was first diagnosed with autism, I set out to be the perfect special needs mom. I worked really hard to know all of the information, read all of the books, all while trying to do the regular mom stuff- cleaning, laundry, meals, etc. I burnt out hard. I flung myself into a depression that wasn’t easy to dig out of. But when I finally got out of it what did I do? The same thing. This cycle repeated itself until I found myself in a therapist’s office dealing with chronic pain and debilitating anxiety and depression. I had to change.  Looking back, I see now what I was doing that wasn’t working, and found things that help.  I was fortunate to understand a lot of these things by the time Abby was born, but there’s still a million more things I could do to save my sanity. These are the first ten that came to me.

1.  Learn how to say ‘no’.

There are going to be people that suck the life out of you. You have enough on your plate, if these aren’t reciprocal friendships or endeavors, say ‘no’ whenever you genuinely don’t want to do something or simply can’t.

2.  Cut out all of the fluff.

Before Casey was diagnosed, I was seriously concerned about not having enough cute nicknacks in my house. It seems SO crazy to me now.  This has been a lesson to me on two fronts: 1. Cut out the literal fluff- anything ‘fluffy’ (nicknacks)  in your house that isn’t necessary. Or, at least, don’t buy any more. It’s one more thing to clean. It’s one more thing to get broken.  I have a veritable graveyard of Willowtree Angels that I HAD to have. Unless it’s something you do as a hobby, (see below) this sort of thing just clutters up your space and your brain. Which leads me to the second lesson: Cut out the figurative fluff. We live in a Pinterest world where there’s always some way to take an ordinary event and make it extra stressful. Children’s birthday parties are less party now and more extravagant events. Your kid isn’t going to remember the fluff, at least mine don’t. They will see pictures of them blowing out candles on ANY cake- store bought or one with baked in tears.

3. You’ll lose friends. Good riddance.

Someone actually did tell me that I’d lose friends after Casey was diagnosed. I didn’t believe her. I wish I had. And I wish I could have employed the second part of this point too. Disability is a fantastic friendship sifter. You’ll find out who your true friends are because they’ll stick around. They won’t expect you to be fun all of the time. They’ll listen. They’ll come over and sit with your kids so you can get a nap. Those who don’t stick around you are better off without. It sucks to learn that friendships aren’t what you thought they were; but it’s sure nice to know before you devote any of your precious time to someone who isn’t worth it.

4.  Don’t overload on disability-specific information.

We are are fortunate to live in a time where information is readily available at our fingertips. After each of my kids were diagnosed, I binged on autism and Down syndrome information. I only read books, blogs, websites and forums about the two. The problem with this is that a lot of the information out there tends to point out the negative aspects of disability. There are things you can’t learn from books- you have to live it.  I finally put down my Down syndrome books when Abby was a couple of months old and just enjoyed my baby.  I’m not saying to not do your homework, just make sure it’s not ALL your doing. Read funny stuff. Read stupid crap. Mix it up from time to time.

5. Listen to those who have gone before you.

Like I said, there is only so much you can learn from books. Life experience is the best teacher. Parents of older children or adults with disabilities know more than you do. They just do. Will they have done things or have the same perspective on your kids as you do? Maybe not. Listen regardless. I’ve learned more from my friends within the special needs community than I have from any book.

6. Don’t stop being yourself.

4bdf329af59c11e2be0322000a9f38f1_7This is a lesson for any parent, but especially for parents with children with special needs. Don’t try to fit yourself into the mold of what you think a special need parent should be. I used to think that I had to be brave and strong and happy all of the time. I had to convey to the world how supremely grateful I was for the challenges we had. Bullcrap. That is a mold I cannot and will not force myself into any longer.   I like my music loud, I swear, I complain and I make a thousand mistakes a day.  It’s not that I’ve stopped trying to be better, no, I just want to be a better version of ME.

7. Find a way to relieve stress.

I should say a “healthy” way to relieve stress. I’ve heard that heroin is a great stress reliever…but you know, it’s heroin.  My therapist back when I was having chronic pain forced me to find something that wasn’t autism, parenting, or housekeeping related to do that I enjoyed. He even went as far as forcing me to show him what I had learned to do. I craft. I make crappy jewelry and cards. I love it though. I have friends that exercise, some that knit and others that mercilessly mock me on Facebook. All of these things give their brains a break from the daily battles and give them something to do that is rewarding to them.

8. Take any break you can get.

I used to put my kids to bed and then think I had to get to work on my house, blog, reading, etc. I don’t do that anymore unless I want to. I use the time to relax, catch up with friends, or do something fun. If you find yourself child free, remind yourself to use that time to recharge. You might have to get a babysitter to have child free time. DO IT. I get how hard it is to find a good babysitter. I have an autistic son and a daughter who is medically complicated. It’s  necessary.  It’s expensive. It’s necessary. Find a way in your budget to have a night free at least every two weeks. If it means giving up eating out, data plans, etc, DO IT. It’s soooo important to be able to get a break. It’s vital to your relationship with your spouse or significant other, and it’s vital to your mental health. Even if you don’t go on a planned date, get a freaking babysitter so you can nap. I once paid a babysitter to watch my four kids so I could sleep in my car. I kid you not.

9. Medicate

You’re going to deal with more stress than the average person. If you’ve tried everything else and just can’t keep your head above water, get some help. You might just need someone to talk to. Do it. I’ve found that just talking to someone isn’t enough. I needed help to defray the daily emotional cost of having two kids with disabilities. On my best days, I still need help. Find a doctor that will work with you to find the best medication. I’ve just spent the last six months trying to find a good medicine to help with my new fun anxiety problems.  I’ve finally found one that gets me back to normal, and I use therapy to help me stay there. There is nothing wrong with needing medicine or therapy. Nothing.

10.  Enjoy it.

cd1e5beeed9811e2b65722000a9e00be_7You are your kids’ parent first. Advocate, teacher, and therapist are important roles, but they aren’t what you ARE. Enjoy it. As I’ve typed this out, Abby crawled on the edge of the couch by me and then dove head first into my lap. She giggled as she wriggled herself around so her feet were on my face. I ADORE her. I love my time with her when we’re not doing anything else but existing in our roles as mother and daughter. I love having Casey wake me up as he tries to stealthily crawl into my room to sneak into the spot between me and his dad. I love what all of my kids teach me, and though I complain a lot about the minutia of motherhood, I absolutely love being my kids’ mother.

autism · Down syndrome

Person First Language: I can’t win.

Yet another person in the Down syndrome community (I’m sorry, a community with people who have Down syndrome in it) has sent me an email saying that it’s wrong for me to say that Casey is “autistic” instead of saying that he has autism. Anyone outside the special needs community reading that is scratching their heads and saying, “I really don’t get the difference.” Anyone within usually has an opinion about this. Don’t get me wrong- I’ve actually had people from within the Autism community tell me that it’s wrong that I ever say that Casey HAS autism instead of “is autistic.”

I can’t win no matter what I write! Maybe I’ll just write it out both ways so that I can make sure to offend EVERYONE:

My autistic son Casey who has autism doesn’t give a damn what you call him. He just wants to tell you about the Titanic.

For me personally, I’m so bored of “person-first language” I could tear all of my hair out, light it on fire, and watch it burn at the feet of a horrified special needs community.  It bothers me in particular when people tell ME how to call MY KIDS (Although, Heidi was not wrong when she said it’s probably not a good thing to call them assholes).  It bothers me that in the Down syndrome community where we plead for acceptance and love of our kids who are ‘chromosomally enhanced’ that we’d actually make it a point to separate the child from the diagnosis. I firmly believe that doing so doesn’t show that the kid is person first. It shows that we are trying to distance them from the way they were born, who they are; as if their diagnosis is something to be ashamed of. Their autism and Down syndrome are not something that they will ever be without. It’s not something they will be cured of  outgrow.  I want them to embrace it.  Does it lump them together with their respective communities of people with their same diagnosis? It sure does. That doesn’t bother me either.

No amount of sentence jumbling is going to make people not notice Abby’s Down syndrome when they first see her. That’s okay with me. I’m not ashamed of her disability. Forcing people to change the way they address her isn’t going to make them think, “Oh, noooooow I see the little girl and not her Down syndrome, I’m going to treat her better!” It’s going to make them think, “Wow, the mother of that Down’s girl is a sanctimonious jerk.” Want to know how I know that? Because I’ve been told it! I used to force people to use person-first when they spoke about Abby. I fully embraced what the community told me to do. I was a sanctimonious jerk about it and I was wrong.

My other beef with it is that it’s linguistically cumbersome. And while I won’t be saying Abby IS Down syndrome because that doesn’t work linguistically either, I’m not going to bend over backwards to use person-first language all of the time. Sometimes “autism” works better in a sentence than “autistic.” When that’s the case, I’ll use it that way.

I don’t care how you address your kids. If you use person first or not, fine. Just don’t tell me what to call my kids.

(unless, as was mentioned, you see me calling them assholes.)

 

Uncategorized

Home

In a few weeks we’ll have moved for the third time in two years, over 7,000 miles between the moves. As we’ve bounced around, I found myself fighting to make a home out of an impermanent placement. It’s been tough, but wonderful.  In these last two years of upheaval, I’ve found that home isn’t so much a physical place made of bricks and beams, but a feeling. I’ve found home in the most surprising of places.

I found that my home will always be first in my husband’s arms. There is no other place that I feel so at peace.

I found home in the giggle of my 3 year old daughter but also in the late nights spent watching her sleep, thankful for every rise and fall of her tiny chest.

I found home in a tiny beach cottage in Connecticut with people I had never met, but within minutes felt like kin.

I found home on the internet with a family of individuals who knew every last bit of me, and have still loved me just the same.

I found home in the contact with my Aussie friend, as she checked in on me, her intuition ALWAYS being right about me and my emotions.

I found home in books.

I found home in a crowded assembly room in the Rhode Island State Senate.

I found home stretched out on the beach in the sun as I watched my three boys throw themselves into the ocean with the same joy that I always have.

I found home under the waves in the warm Bahamanian waters.

I found home in my own house here, as fifteen children clambered loudly about me and four friends who I had met through the autism community. Four women who I have watched as they bravely face the challenges of raising kids on the spectrum, but do so with a smile on their face and joy and compassion in their being.

I found home in a beautiful library in Providence as I marveled at the diversity of experiences that surround being a mother.

I found home in early morning cuddles with Casey, late night talks with Carter and in the constant singing of Peyton.

I found home in a conference for adults with Down syndrome as they taught me to expect only wonderful things for my daughter.

And I found home as I have awkwardly plunked out clumsy words and feelings too deep to express on this blog. In the comments of support, of direction and of laughter. Thank you for sticking around with me through these last two years. This blog has grounded me in areas that I needed to take hold, and set me free in areas that were weighing me down. Thank you for your letters, your friendship and as always, for sharing. Thank you for helping me to see that I can do some good with this dumb blog, and for making me feel like the time I spend here typing out insides is worthwhile. Thank you for being my home.

Abby · advocacy · Down syndrome

My Message Was Lost With My Words

Whether you believe it or not, I choose my words carefully on this blog. I wrote two posts about abortion and Down syndrome. The first post I wrote on in two years ago was my first post to ever go ‘viral’. It was read and shared by people who believed exactly as I do. I patted myself on the back and thought that I was really getting the message about choosing life with Down syndrome out there.  That my words were making a difference.

A funny thing began to happen. I watched as people would land on this blog using search terms like “Should I abort Downs syndrome baby?” and “Prenatal Down syndrome abortion.” A couple of times, I watched where they went on my blog. They came, they read for a minute or two, they left and never came back.  They read the words and were turned away from the real message. I know from speaking to one person who came to me worried about keeping her pregnancy with a baby with Down syndrome that my words in those posts were harsh and shut down the conversation. They didn’t allow space for someone who really wanted to see what life is like for our family and to poke around to know the reality.

My message was lost in my words.

I find myself getting offended at the very thought that someone wouldn’t want a child like Abby, and that leads me to say things in ways that shut down conversations. It makes me an asshole, not an advocate. At the end of the day, my views on it really won’t make as much difference, I think, as just being open and honest about our lives. People are going to make whatever choice they are going to make, and with anything, it’s not my place to condemn them. What I want is for people to see how good life really is for Abby, even if it’s not always easy.  I want people to STAY on my blog to see that if someone like me can handle the things on my plate (albeit poorly at times…lots of times) that they can, too.

I want people to know the facts, both good and otherwise, about life with Down syndrome. Research shows that doctors aren’t trained in delivering such a message to expectant mothers, and a great deal of the time, they give information that is outdated or downright wrong. If you want to learn the facts about Down syndrome, I HIGHLY suggest you go to this site and order or download a copy of Understanding A Down Syndrome Diagnosis. It’s free.

If you’re here because you’ve been given the news that the baby you carry has an extra chromosome and need someone to talk to, feel free to contact me. I beg you to read on. To see the good, to know what to expect of the hard, and to know that you’re not alone.

Uncategorized

Thick skinned.

I wish I could just walk away without saying anything. I wish I could say that I didn’t even care to read the posts or the comments. I wish I could say it didn’t matter to me that people called me the worst things anyone could call a mother. I wish.

I was honest. I wrote a post that resonated with a lot of special needs parents, and then chose that post to do for Listen to Your Mother. I chose it over anything funny or uplifting as I truly believed, and still believe, that it was one of the most honest things I’ve ever written. It wasn’t easy to write, and it definitely wasn’t easy to give. I’m not a natural public speaker. When the videos came out, I watched it and cringed and cringed and cringed. I was embarrassed to post it. I only saw fault in the video.

What came next was the most amazing bunch of comments, shares and emails from people who had seen the video. I sat and cried as I read. I felt uplifted, little did I know how much I would need that in the days ahead. While most parents said that they have felt what I felt, there were a few that took me to task. Some where thoughtful in their disagreements, which is fine. I’m open to that kind of conversation. Some, without knowing me, without ever reading my blog, took me to task. Among other things, they said they felt sorry for my kids because they ended up with a mother like me.

I want to tell you that it didn’t hurt. I want to come across as being this picture of perfect strength. But that’s just not me. I’ve been waging a war against depression as it’s slowly crept into my bones.  I’ve been taken off one medicine and put on another, and it’s screwing me up something fierce. Other circumstances in my life have taken whatever thickness I had accumulated to my skin and rubbed me raw.  So when these posts came through (I get ‘pinged’ on my blog any time someone adds my web address to their own) I had only the cushion of the wonderful comments I had received to soften the blow of such harsh words.  I wish one golden comment outweighed one horrible one. I wish that I remembered all of the good and shrugged off the bad. I’m working on that. One day I’ll be able to, right?

I wanted to go to these blogs and posts and write harsh rebukes about how they didn’t know me. I wanted to show them my blog and tell them how wrong they were. But they wouldn’t have come to see. They want to believe I’m terrible. They want to be “horrified” with me. They want to attack, and have done so repeatedly for the past year or so since I got on their radar. It’s sad to me. These are members of the disability community. Instead of fighting for rights, for educational changes, or for things that actually matter, they just attack each other then bitch about how nothing ever changes.  They repeatedly question my advocacy, my mothering and the kind of human I am without knowing me or how hard I work to affect change.

And it hurts. It makes me want to quit fighting. I can’t fight for rights along side them if I’m fighting WITH them.

In the end, this blog isn’t for them. It’s not for my kids either. It’s for me. It’s for the other parents who feel the way I do and have told me that I have helped them to not feel as alone. Your comments here and on my page have kept me going when I wanted to throw in the hat. You’ve kept me writing, and I’m supremely grateful.

Uncategorized

Creating Toddler Adventures

Today’s post is by my friend Deanna from Everything and Nothing from Essex. She has a daughter, Addison, and a boy, Carter and another boy on the way. Addison has Down syndrome and is the most expressive child I think I’ve ever seen.  Every time I get on Instagram, I scroll scroll scroll to see the what Deanna’s posted for the day.  Her blog is one of my favorites as she writes clearly, is down to earth and so honest.  I’ve asked her to tell you about this cool thing she’s been doing on Instagram- and I want you guys to join the fun.

About a month ago, I was sitting in my disaster of a house, overrun by toddlers, nauseous from unborn baby #3 trying to kill me, and feeling immensely sorry for myself. On Instagram everyone was going on exotic vacations. On Facebook, the world was checking in on incredible adventures. On Pinterest, people were redecorating, gourmet cooking, pithy saying, marathon running. My big accomplishment for the day was changing two poopy diapers without losing my last meal.

I was feeling less than fabulous. The four walls of my house were shrinking in closer and closer until suffocation surely wasn’t far away. My children were making messes I couldn’t clean up, and I wasn’t providing any sort of activities for them that gave me the “awesome mom buzz” after they were asleep contentedly in their beds.

The summer ahead of me looked bleak.

I posted (of course) an awkward, feel-so-sorry-for-me blog post and then sat back to wait for a better life…or death…whichever came first, really.

It then occurred to me- what if I could somehow get us out of the house at least once a day? What if I could plan something that would give them a good afternoon and force me to ignore morning sickness even for just an hour?

That’s when #creatingtoddleradventures was created.

Even though I wasn’t feeling my best- I wanted to take the small amount of energy I did have and spend it where it mattered- on the laundry. Totally kidding. I meant on my kids. You know, the ones wearing the dirty clothes.

I committed to 30 days, doing SOMETHING new and adventurous once a day (according to the toddler definition.) Some days this meant going to the local aquarium, some days it meant something as simple taking our dinner out onto the front deck and making it a picnic.

The truly awesome thing is, toddlers think that pretty much everything is an adventure. So I threw grocery shopping and Lowes exploring into the mix as well.

I have been documenting our adventures on Instagram under #creatingtoddleradventures, and I have loved seeing others jump on board with their own toddler adventures. #creatingtoddleradventures really could be just about anything. The purpose behind it- creating purposeful, new experience for our kids- that’s what’s really driving that hashtag.

The truth is- as corny and silly as this might sound- it’s just what I needed to stop sitting around feeling sorry for myself and creating our OWN adventure no matter how small it might appear compared to those exotic vacations on Instagram. It’s filled me with a new sense of daily purpose, and it’s given me the push to introduce my kids to new things that have been on my list forever for “someday.”

Thing like:
Going for a walk along Lake Champlain,
 finding a new hiking spot,
 eating watermelon out on the deck,
 going to the pool,
exploring Lowes,
 finding new play places,
visiting the local aquarium,
and tramplining it up before dinner
(not to be confused with “tramping it up before dinner”)…

Being intentional about adventure- being intentional about spending time with my kids and throwing away all guilt about everything that is not getting done- this has saved our summer.

Because of some pregnancy stuff, I haven’t been able to do every single day of the 30 days, so we’re going to continue a bit longer. #creatingtoddleradventure is too much fun to stop now. Plus, there’s that whole motherhood sanity thing to consider…

Add your pictures to the fun on Instagram with the hashtag: #creatingtoddleradventures

To read more from Deanna (and you should be seeking out superior blogs to this one…), please visit: Everything and Nothing from Essex

To follow Deanna on Instgram, go here.

To follow ME on Instagram, go here.

As always, feel free to share!

Uncategorized

His lovely lymphy lump.

Peyton will do just about anything to stall his bedtime. That stalls mine and Lance’s together time (read: sit ‘together’ on the couch while we play on our phones ‘time’). So when he came in with something new, it really didn’t phase us any.  “My armpit hurts when I stretch like this,” he said as he STREEETCHED his arm way back. Without either of us looking up, I said, “Well then don’t stretch your arm like that, dummy.” (The ‘dummy’ part was implied, but not stated directly.) We then sent him off to bed with a threat of what would happen if he got out of bed again.

The next morning, as I was sitting with Abby at the breakfast table, Peyton came in and said, “My armpit hurts when I stretch like THISSSSS” and stretched his arm way back, but not as far back as the night before.  “Okay,” I grumbled as I pulled myself up, “it hurts HERE?” I said as I jabbed my finger into his armpit, hoping to tickle it. Peyton winced and then I did the same…

Big. Freaking. Lump.

Peyton's large lymphnode in his armpitThat’s right kids, my son had a lymph node that had swollen to nearly four inches in size.  I felt bad. A little. Not a lot though. Peyton comes up with some pretty crazy ailments. He once came in and said, “My head hurts when I bang it on the wall.” He’s also the kid that I have to promise that no gigantic men will come, stomp down our house and ‘enslave us forever’. He’s really got the most amazing imagination. It makes things so much more fun.

On our way out to the doctor, he asked me what was causing the lump. “I don’t want to scare you or nuthin’ but big armpit lumps are the first sign of zombism. Did you get bitten by a zombie? Are you sure? Sometimes you don’t feel it. Do you crave brains? Let me know if you have any SORT of crazy craving for human flesh.”  He acted like he was entertaining the notion, but then blew me off, “Zombies aren’t real, dummy.”

His reply only led to escalation. At the doctors office I saw my chance to make things worse when the doctor came in. Peyton hadn’t gotten back from the bathroom yet so I quickly whispered, “Tell him lumps are the first sign of zombism…I mean…you know…if it’s not something scary like cancer or herpes.” She totally did! She also asked him just randomly in her questions if he’d done ‘hard time in prison.’ That doctor GETS ME.

We got assured that it’s probably just an infection, a scary amount of antibiotics I’ll forget to give him and got on our way.  After we got home Peyton came running in to where I was sitting with his grandparents, who are here visiting for the week. “I know what it’s from!” he said. “I do A LOT of armpit farts on the way home from school. The bus driver HATES it.” And then he commenced doing a whole musical production of armpit farts with his one good armpit.  Not even THAT lesson was learned from this.

He got super sick that night, but is fine now. The lump is half the size now.  He’s still stalling before bedtime though. Tonight it was because he was afraid that a monarchy would take over.  A monarchy.

Abby · Down syndrome

Happy Hearing Day, Abby.

Abby squirmed on my lap as I tried to hold her still as the doctor and her assistant worked. “Shhh, shhhhhh…almost done,” I whispered. And for the first time…ever…in Abby’s life she heard me.

My daughter heard me whisper to her. She turned. She listened. She calmed.

Down syndrome, hearing loss, hearing aids, child, down syndrome girl

I was heartbroken when we learned that Abby’s hearing loss was permanent.  The realization that she had never heard me whisper tore through me. All of the nights I had spent walking the halls as she struggled against sickness, whispering in her ear, singing softly, and shhhhshing her never made it past her tiny ear canals.  With every whispered “I love you” as I put her to bed, she saw my mouth move, but never heard the words.

I’ll never forget that simple moment in the doctor’s office as they monkeyed with her new hearing aids. The first time she turned towards me when I whispered in her ear. I won’t forget the first time her eyes lit up as she walked around and heard her own footsteps for the first time. She turns towards the sound of chirping birds and is overwhelmed by the loudness of her three brothers.  She hears me now when I call her from across the room. We’ve turned down the TV to a level that doesn’t fill me full of rage.

It’s beautiful. And soon, I’m sure, the sounds that were missing for her to make sense of spoken language will come and I will have that rush of delight when I finally get to hear her call me ‘mom.’

If my life has shown me anything, it’s that the times that hurt, the times that were so low, make the great times SO MUCH greater. Waiting makes the rewards that much more sweet.  Abby’s taught me to slow down a little bit, and to revel in every single thing- even the sound of my own footsteps.

Happy hearing, Abby.

Abby in her hearing aids