Joseph: living on the spectrum

I have been thinking about writing this post for so long. Almost two years, in fact. I’ve started it many times, but I haven’t been able to find quite the right words.  Instead of using the perfect turn of phrase, I’ve decided to just jump in and use the imperfect prose that comes from my heart.

Many of you know that Joseph received an diagnosis of Autism Spectrum Disorder (ASD). It’s not something that I have hidden from our family and friends and have no trouble discussing with others. However, I have been hesitant to discuss it here because this format doesn’t leave much for conversation or questions that so often follow that statement. ASD is such a broad, umbrella diagnosis, it’s like saying I have cancer. . . Cancer can mean anything from something completely treatable, like a small melanoma that can be removed to a devastating, evasive disease like systemic bone cancer.  . . or anything in between.  Instead explaining ASD as a whole, I’d rather share Joe’s story and how it relates to him. If you’d like more information about ASD, I’d suggest looking here and here.

We started noticing some speech delays with Joe right around 2.5 years old. At first I thought it might be because of the stress of moving from Columbus to Chicago, but after talking with our pediatrician (and some great advice from my mom) we sought some assistance through Illinois’ Early Intervention Program. (EI)  This state-run program gave us access to in-home speech, occupational, and developmental therapy until Joe turned three, after which he would receive therapy through our local school district. I cannot express the gratitude and love I have for our therapists, especially Jamie and Janna, they were amazing with Joe and provided me no small amount of comfort.

When Joe turned three, he transferred into our local school district’s Early Childhood Special Education Program (ECSE) – a specialized preschool program for children with special needs. Again, we were blessed to work with some truly wonderful, talented teachers, therapists, and staff. They made the transition of Joe going to school, something I was anxious and scared about, a true joy. Joey absolutely bloomed and his progress was astounding. I know that it is because of the dedication of that team that allowed it to happen.

After Joe turned three, we took him to a developmental pediatrician, Dr. B with Lurie’s Children’s Hospital. Dr. B did a lot of testing and came to the conclusion that that Joe fell somewhere on the Autism Spectrum. He is considered to have a “scattered diagnosis” meaning that some typical traits are not present in Joe, but others were. Overall, he’s considered “very high functioning, highly verbal, with some  issues with sensory processing.”

Joe continued in the ESCE while we lived in St. Charles and again once we moved here to Grand Rapids. He is excelling in the program here and we will soon find out the plan for Kindergarten. He is testing very high academically – currently reading on a second grade level, understanding math concepts, spatial relations, and more. His challenges includes peer interaction, some pragmatic and social speech skills, attention span/focus, and compliance with non-preferred tasks.

I can’t overstate how much of an impact EI, our schools’ ESCE program, and all of our wonderful educators and therapists have had on Joe. Especially now when many of those programs are in jeopardy. I cannot imagine where we would be without these programs. We are also VERY fortunate to have insurance that has helped defray the costs of therapy, many families are not in that situation.

I wanted to share because I know that there can sometimes be misconceptions about ASD and a tendency for some families to hide their diagnosis for fear of people not understanding or stereo-typing their children. I feel that ASD is only one small part of Joe, but it does help make him who he is. Why would I ever want to hide part of that beautiful boy away? I never will do that, it would dull his sparkle.

All in all, Joseph is like any typical five year old. He loves playing with cars, trucks, trains, and legos. He loves being outside and exploring the world. He loves to swim, sing, dance and play. He loves his iPad and watching anything by PIXAR. He is stubborn, generous, sensitive, strong, kind, smart, and silly. He brings joy and happiness to all that meet him and is truly my sun and stars.


 

April is Autism Awareness month. Please consider participating in some way. Perhaps by lighting it up blue, join a walk, or donating supplies to your local school’s Special Education department.

 

5 Years . . .

There is a box in my closet that holds a piece of my heart. I cannot open it for it fills me with dread whenever it happens to catch my eye, yet it is cherished and  I will never let it go.  This one small box contains all the earthly artifacts I have of the twins. Photos that I can’t bear to look at, yet are seared into my heart and brain.There are hospital bracelets, birth certificates, death certificates, and the guest book from their funeral. Tiny foot prints on index cards, rattles that were never held, prayer cards. . . doll-sized clothes that were given to them by the hospital. I hate those clothes, they are stiff and itchy to the touch, reminding me of how unbearably fragile and soft they were. The box is full of the ephemera  of heartache, pain, sorrow, grief, joy, hope, and love. Someday, I hope to be able to open this box again, to be able to look at these precious bits without staining them with tears. Today is not the day.

 

 

Five years  now have gone by. I still visit that bench, but not as often. Your brother tears me away, holding my hand and dragging me into the frenzy of life with an almost 4 year old. But please know, Mary and Christopher,  you are still bright, shining stars that guide my way. Mommy loves you.

On the move  . . . .again

So, there has been a lot going on behind the scenes around here. 

 Shawn took a new position in November that’s in Grand Rapids, Michigan. He has been living there during the week and coming home on weekends. We’ve been trying to adjust and see if this could work long term, but it’s really too much for us to handle.

 The stress on Shawn and myself is difficult, but it’s hardest on Joe. He misses his dad terribly and it is affecting his sleep and made him very clingy/nervous. Up to this point, he has been flourishing here and it pains me to see him struggle with it. 

This has made us decide to sell the house and move so we can all be together. We’re so sad to leave our home, especially after all the work we put into it, not to mention our neighbors, friends and community that we quickly have grown to love. It’s even more heartbreaking to leave our family. I haven’t lived this close to my parents and siblings since I was in high school, and it’s been wonderful to have them be such a large part of our lives again. Joe’s had the blessing of having my parents around (even living with them for a time) and I know it will be difficult to not be so close. 

We just finished having some painting done and placed the house on the market this weekend. I dearly hope it sells quickly, I want this transition to be as quick and painless as possible. 

I’m optimistic that we will create a wonderful life in Grand Rapids. It’s a great community and reminds me of Madison, which we dearly loved. I’m looking forward to all of us being together again as well. Honestly, it doesn’t matter where Team Colley hangs our hats, along as we are with each other. 

Four Years . . . 

Time continues to pass. All the while there is a place in my heart that I continue to visit. A tiny place, a sheltered spot from the everyday hectic living that must go on. Like a park bench off the beaten path, near enough to the action to watch the world go by, but removed enough to be its own little oasis of calm. I go there often to remember, mourn, and think of what could have been.

Sometimes their are brief flashes of memory. Exquisitely miniature toes, the warm of a tiny body next to me. Sometimes there are regrets, why didn’t I ask to hold you both together? Why didn’t we take more photos?

As I watch your brother grow, I can’t help but think of both of you here with him. Playing with trains on the floor, clamoring for cookies, giggling under the covers.

The years pass, but you never fade. They only make those few precious moments with you gleam brighter as I hold you in my heart.

Happy 4th birthday, Mary and Christopher. We love you so.

101 Things: 1. Go to Hoopla

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A few weeks ago, I attended Stella & Dot’s national sales conference in Orlando. It’s called Hoopla and I can definitely say it lived up to its name. Imagine over 3000 women getting together to learn, celebrate, and support one another. It was such a great experience and so much fun! While at Hoopla, the new fall line kicked off with an amazing fashion show, we learned about a new collaboration with the non-profit organization, Every Mother Counts, and we had tons of great training on how to build our business.

I was truly amazed at the sense of camaraderie and friendship among my fellow stylists. It felt more like a family reunion/wedding reception than a work conference. What struck me is the lack of competition and cattiness. Everyone is so supportive and welcoming and wanting to help you be the best you can. Pretty great stuff, considering that sometimes women can than gracious in that area.

I could bore you with all the details, but I think I’ll just give you my big take away and share what my new goals have become for this adventure.

1. I’ve realized that I have really missed my Stella & Dot business these past months while dealing with the move and living with my parents. It motivates, challenges, and thrills me in a way that can’t be replicated by being a mother and wife. It helps me remember who I am as a person and makes me better in other areas of my life.

2. I need to get over being afraid and making excuses. I’ve been holding myself back by using this move and relocation as a reason that I am not succeeding in my business. I have to make it a priority because I will only get out of it what I put in it.

3. I am setting a goal of having 15 trunk shows and building a team to gain the rank of STAR stylist by the end of 2014. This is huge, but they say that if you’re goals don’t scare you, they aren’t big enough!***

 

 

 

 

***This is going to be a lot of work, luckily I have the world’s best support/cheerleader with Shawn. I couldn’t even dream of this without him.

Three Years . . . .

Why does it seem like yesterday and yet a lifetime ago? Three years. How is this possible? I cling to your memories, what little we were able to have together. Most of it while you were inside me. I used to chuckle and call you my little octopi, you would both wiggle and squirm and wrestle one another. I think about the brief moment that I got to hold you both, amazed at your tiny preciousness. Rosy pink and oh so fragile. Such fleeting time together, but you are both etched into my brain and my heart.

Your little brother grows and grows. He is so full of life, I sometimes wonder if he will burst. A ball of energy and always on the run. Quick to smile and laugh, he brings joy to everyone. I know that you are both looking after him, keeping him safe in this world.

I struggle this year because we have moved away and I’m unable to visit you today. I feel overwhelming guilt that we are not near you. Please know that no matter where you father, brother, and I live on this earth, we all love you and keep you close to us in our hearts. I love you Mary and Christopher, Happy Birthday my loves.

You have to do the hard things.

Blue Sky Days

You have to do the hard things.

  • You have to make the call you’re afraid to make.
  • You have to get up earlier than you want to get up.
  • You have to give more than you get in return right away.
  • You have to care more about others than they care about you.
  • You have to fight when you are already injured, bloody, and sore.
  • You have to feel unsure and insecure when playing it safe seems smarter.
  • You have to lead when no one else is following you yet.
  • You have to invest in yourself even though no one else is.
  • You have to look like a fool while you’re looking for answers you don’t have.
  • You have to grind out the details when it’s easier to shrug them off.
  • You have to deliver results when making excuses is an option.
  • You have to search for your own explanations even when you’re told to accept the “facts.”
  • You have to make mistakes and look like an idiot.
  • You have to try and fail and try again.
  • You have to run faster even though you’re out of breath.
  • You have to be kind to people who have been cruel to you.
  • You have to meet deadlines that are unreasonable and deliver results that are unparalleled.
  • You have to be accountable for your actions even when things go wrong.
  • You have to keep moving towards where you want to be no matter what’s in front of you.

You have to do the hard things. The things that no one else is doing. The things that scare you. The things that make you wonder how much longer you can hold on.

Those are the things that define you. Those are the things that make the difference between living a life of mediocrity or outrageous success.

The hard things are the easiest things to avoid. To excuse away. To pretend like they don’t apply to you.

The simple truth about how ordinary people accomplish outrageous feats of success is that they do the hard things that smarter, wealthier, more qualified people don’t have the courage — or desperation — to do.

Do the hard things. You might be surprised at how amazing you really are.

Original article from Business Insider.

I read this last week and it really struck a chord. Moving. Living in a state of limbo at my parents house. Solo parenting while Shawn is traveling for work. Snow, snow, frigid cold, more snow. Starting my Stella & Dot business from scratch. Housebound with a toddler. All these things are adding up and making me want to “take to bed” like a Victorian dowager. However, I continue to slog away and do “the hard things” knowing that all this shall pass and Spring -figuratively and literally- will bring sunnier days. Until then, I’ll keep my head down and keep pushing forward.

Sweet Home Chicago

You might have noticed my recent lack of posting around here lately. Well, I’ve had good reasons, to be sure. I’m happy to report that Shawn has accepted a new position and we’re in the process of moving back to Chicago.

As you can imagine, things have been quite the whirlwind. Getting the house on the market, and subsequently sold, packing, getting Joseph and Walter out to my parents, etc. It’s been overwhelmingly insane. Thank goodness for my parents helping us and the aid of some of our good friends. I would probably be moving into the loony bin if it wasn’t for them.

I have to admit that the move is bittersweet. We were so happy to move back here – only three short years ago – to be reunited with our good friends, have our children here, being able to have Jeni’s ice-cream whenever we want. (Just kidding – not really!) But, I am thrilled with being close to my family again. I haven’t lived in the Land of Lincoln since I was 20 years old. I am hoping to rekindle some friendships from school, it will be wonderful to see them outside of the land of Facebook and the Interwebs.

We will be temporarily living at my parents house while we look for a home. They have been so generous and supportive, although I think that my mom is solely focused on the fact that we will have unlimited access to Joe. I hope that we can find a home soon, so we do not wear out our welcome.

I hope to be checking in a bit more regularly to let you know how things are going with transitioning, how Joseph is handling the changes, etc. But for now, I am just going to sit here and listen to this on repeat:

A Few Words of Gratitude

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Thanksgiving is one of my favorite holidays. I think it is the kinder, gentler version of Christmas. Celebrating your family, friends, and blessings in life without the hype, stress, and overall chaos that has become a part of the Holiday Season.

Today I intend to hug, kiss, and snuggle these two who I am most thankful for. My husband, my best friend, my partner, my teammate. You are my rock, grounding me when I fly too high (or off the handle), lifting me up and cheering me on when I struggle with being confident in myself. My beautiful, amazing boy. You touch my heart and light up my world. You truly are my sun and stars. I love you both and I am so full of gratitude that I am able to share this life with yours.

The New Normal

Things have been pretty quiet on the old blog lately do to a recent shake up here for Team Colley. Two weeks ago Shawn’s position was eliminated at Tween Brands and he is no longer employed with the company.

They gave him a generous “exit package” so we are currently okay financially and are covered by insurance while he seeks a new position. Which is a major relief. However, our world has otherwise been turned upside down. Joseph and I had a fairly good routine going on for a while and now that Shawn is home with us all day, we are trying to figure out a “new normal” for us. In ways, this has been great; Shawn has been able to have some real quality time with Joe, things are a bit easier in wrangling him with us both around to do it, we’ve been able to get some things done around the house that we never seem to have time for, and I’ve been able to have a bit more time working on launching Stella & Dot.

The flip side is that we’re tripping over each other in doing things around the house, arguing over the “right” way to do things, and are still getting comfortable being around each other in this new way. Of course you add in the anxiety and stress of not knowing what the future holds and it can lead to some hairy moments.

All in all though, I think that we’re starting to find our new groove with things and are looking forward to what the future may hold. We know that as long as Team Colley stays together, we can get through anything.