Friday, May 22, 2015
I should have some great spotlights in the next couple of weeks so stay tuned, but in the meantime I thought I'd share a couple of cool special needs related links.
Hashtag #toylikeme social media campaign spreads like wildfire in the UK for smaller (and now larger) toy companies to start making toys with disabilities. Such a fantastic idea!
LOVE this story about a special needs mama fighting to let special needs families take vacations. The gist--a lot of medically fragile children receive hours of round the clock nursing care for their children each week paid for by medicare. BUT these families can't use these same allotted hours to allow a nurse to come with their families on vacation. In her own words, "Our seriously disabled child doesn't have the right to visit his own grandmothers." This needs to change. Read more here, sign the petition here (already 13,000+ strong!).
Have a fantastic weekend!
Thursday, May 21, 2015
One of my favorite things I love about our house is the yard. It's large, with a lot of beautiful, mature trees, lush, green grass and for once in our lives we're not situated on or near a busy street. In fact we're tucked away in the middle of a quiet neighborhood, at the end of a cul-de-sac. And while I still have my reservations about being forever in Cincinnati, I often get a little thrill when we pull up to our place and I see this little oasis surrounded by trees and grass and think, that's our home. As it turns out, the grass really is greener in Cincinnati. Again, not metaphorically... I still don't know about being here forever, but look at that grass! It's like a sea of freshly polished emeralds.
I was excited about the yard and trees and cul-de-sac before we moved here, but I didn't realize the value of these things in real life. This yard means I can go outside and do any number of chores--weeding, building a stick teepee or cleaning out the garage--while my 1 year old runs wild and free.
To be clear:
The things I am doing: Weeding, making a teepee out of sticks, garage cleaning, lounging on a blanket, what have you.
Things I am NOT doing: Keeping my baby from running into a busy street, yelling at her to come back to mama right this instant, hovering over her every move.
An unexpected little freedom we have heretofore not experienced.
The student becomes the master.
Zuzu's latest love affair is the swing set. This swing set is of the "they don't make them like they used to" variety--metal and SO tall--and since it was missing a swing I jimmy rigged our plastic toddler swing to the old chains (don't be alarmed, but packaging tape was involved in this transaction). Now she gets one glimpse of the swings and takes off in her familiar (but all too fleeting!) toddler run that is surprisingly steady for as wobbly as it looks.
And then my heart melts.
And then we swing. Or rather I push her while she swings.
And this is not just a freedom I'm enjoying with a busy 1 year old, our other two girls spend hours outside each day when weather permits. PSP considers herself a rather skilled tree climber, and even has created a sort of make-believe town with her friends from the surrounding trees--there's a pantry, the bedrooms and a meeting place. Note: Most of the climbing trees actually belong to our neighbors, all of which are delighted to have little girls climbing their trees. And Lamp loves taking her new chair out side where for the most part, she can keep up with the big girls. And sometimes, she gets in the trees too.
Since I know someone is going to ask... We are loving our new shoes from Mon Petit Shoes. They are so soft and really high quality. Also, for Lamp they were totally down with making two different sizes to accommodate her needs for any other special needs mama's with similar concerns out there. One reason I love supporting small businesses. Styles for both boys and girls--check them out!
The thing is, for years my husband was like "Cul-de-sac! Quiet street!" and I was like, 'Beautiful victorian! Amazing, mid century modern!"And let the record show that I would not change those other two homes for anything. I loved them and felt we were right where we were supposed to be for those times in our life. It's just that I've always believed that the indoor space trumped the outdoor space, and when push comes to shove it still does.
BUT having this grand yard has really shifted that perspective. It's like having another room--a really, really big room that your kids can totally mess up as much as they want. Even more than that, I'm reminded that something in theory vs. something in reality is often very, very different. Sometimes it's better, sometimes it's worse, but truthfully you don't really know until you try. So my free advice for the day is maybe give that theoretical thing a try. It may be worse, it may be better--either way at least you'll know.
Friday, May 15, 2015
***Winner of the $500 Land of Nod Giveaway is @askellerlove on IG!***
So excited for you!!
Hi Miggy! Thank you so much for having my family as a Spotlight! My name is Amy, and my husband Toby and I moved just to Austin, Texas with our three daughters, Sophia, Avery, and Lyla Rose, from the Big Island of Hawaii one year ago. Almost two years ago, when Sophia was 10, she sustained multiple skull and craniofacial fractures, with a sub-dural hematoma, resulting in a Traumatic Brain Injury, caused by a tubing accident at her Grandparents Cabin.
Miggy: Amy, hi! Thanks for being here today and sharing your wild, special needs roller coaster that has encompassed the last 18 months of your life with us today. When most of us hear 'special needs' we associate it with a condition that someone is born with. However, it's important to remember that special needs can come about from a variety of circumstances like military service, abuse and in your daughter's case a terrible accident. Can you take me back to the day you knew your daughter was injured? What happened, and at what point did you realize this was life changing? How have your feelings changed in the past 18 months?
Amy: While tubing, a wave threw her cousin's head into the side of hers, with the force of a steel baseball bat, fracturing her cheekbone and skull in multiple places along the temporal lobe, resulting in a sub-dural hematoma, (bleeding in the brain), and rendering her unconscious. Her Grandparents acted quickly and got Sophia and her cousin out of the water and to the nearest hospital. (Sophia's cousin, by the way, had a mild concussion, and was released the same day as the accident, and thankfully, has not had any lasting effects because of the accident.) My husband and I were not at the cabin at the time of the accident. We had rented the cutest little motel room on a lake about an hour and a half away, and upon receiving the first call, started to pack up to make the drive to my in-laws cabin. At this time, we knew that the kids had "bonked heads pretty good." Twenty minutes later, we received another call from the ER Physician to inform us that Sophia was being transported via helicopter to a Level One Trauma Center, the next state over in Minneapolis. We had to verbally give permission for emergency brain surgery, and we learned she was unconscious. We had a three hour drive, not knowing if our daughter would be in brain surgery, or in fact, if she were going to survive her injuries. We pulled over on the side of the road, fell to our knees in a corn field, and prayed.
When we arrived at the hospital three terrible hours later, we were so blessed to find that Sophia thankfully did not need surgery. She remained unconscious for the better part of three days. On the third day, she awoke, and our prayers were answered. She was released after a week with a mountain of information and paperwork for follow-up medical procedures.
Because we lived in Hawaii, we had limited access to specialized medical care on the Island. I did not realize at first how complex and life changing Sophia's injuries were, as we were so relieved she seemed okay. Sophia suffered from Post-Concussive Disorder, which left her with debilitating headaches. For nearly a year, she had to stay in a quiet, dark room, with very little interaction with anyone, and unable to enjoy reading, coloring, watching movies, the usual things a ten year old does when they're sick. There were many, many tears, nightmares, and dealing with PTSD. As the weeks went by, her medications kept increasing, and I kept expecting her symptoms to improve. When I would speak with her Neurologist in Minneapolis, I was always told the same thing."Every TBI is different, the brain heals at it's own rate, she may always have pain,we just don't know." We had to take an airplane to O'ahu, (the island next to the Big Island) where we were told the same thing, by a different neurologist. Our house was no longer filled with the happy, chaotic noise of our past. Our younger children had to learn to be as quiet as mice. Have you ever tried to keep a 6 and 8 year old very quiet for 11 months? As Christmas rolled by, it had been 5 months, and there was very little improvement for our girl, I was at my wits end. My mama voice was telling me that the answers the doctors were saying weren't entirely true, and I just felt as though there was another answer. She was just not improving at all. After much prayer, and a lot of research, I had found Dell's Children's Hospital in Austin, Texas had an amazing Pediatric Neurology program. I found a highly ranked Dr. who had experience with Post-Concussive Disorder. I sat my husband down and told him that I was moving the girls to the mainland, even though it made no sense on paper, as I had never even been to Texas, we had no friends, family, or job waiting for us. I told him I was sure, and that I had received a knowing feeling through prayer that I was doing the right thing. Blind faith, I said. He was amazingly supportive, and within 5 weeks, my children and I were living in Austin, Texas. My husband stayed behind for 9 weeks to finish up packing, and the overall HUGE effort to move from Hawaii to Texas. We had, in an instant, decided to leave our home, friends, school, job, health insurance, possessions, (It is very, very expensive to ship anything to/from Hawaii, as you can imagine, so we just said goodbye to most of our material possessions.) Sophia's new Dr. accomplished exactly what we needed, for Sophia to be pain free. After three months of weaning her from all of her meds, she found one, ONE, that worked. She also began physical and occupational therapy immediately. The day Sophia woke up without a headache was met with tears, and more tears of gratitude. It is humbling to see your eleven year old daughter crying for gratitude for no longer being in pain.
Because her accident occurred on the Mainland, we were considered out of network by our insurance. Because we relocated, my husband left his job, as a commute to/from Texas to Hawaii was not sustainable. This obviously put a strain on our finances, as we watched thirteen years of savings disappearing quickly. Because my husband was unemployed for seven months, and we had several specialized Dr.'s and therapies, the stress was unbelievable. It was at this time that I really considered living separately from my husband, as we were both wound as tight as a firecracker, and yet, still spending an incredible amount of energy on being calm and steady for our children, who were yanked out of school, and everything about their lives were different. It was the most challenging time of my life, even though Sophia was improving. Oh, how I prayed. I decided to use the philosophy of "leaning in" to my marriage. I am very, very grateful I made that decision. We are currently still in therapy, and I am grateful for having a husband who is as willing as I am to "lean-in!" Also, he is no longer unemployed, which obviously, lightens the load.
Miggy: Explain how your Sophia’s needs affect your day-to-day life?
Amy: Sophia's life is very, very different today than it was a year ago, thankfully! We are no longer required to have a quiet, dim house all of the time, and our weeks are no longer filled with multiple appointments to a hospital. All of our children have been in therapy as well, as the two younger children witnessed the accident, and of course, also lost their home/toys, etc. It is amazing to look back and see how far we've come in one year. We have realized that she won't be able to return to some of her activities we did before the accident, which was very hard for her. It was also recently discovered that Sophia has been living with double vision, and visual perception difficulties. She is in the less than one percent on some spatial/brain/eye/ coordinating abilities. Essentially, Sophia's eyes do not work together, and her eyes/brain aren't working so well together either, making Sophia the hardest worker I have ever known. This is not uncommon for people with her kind of injury. Because of this, Sophia will participate in Visual Perception Therapy, everyday for one year. This is a challenge, but it will help her so, so much later down the road, (she will likely be able to drive!!), as she is recovering her brain function, and correcting her double vision. How my mama heart broke, realizing she had these issues for most of the school year. Onward!
Miggy: What are the biggest worries that weight on your mind and heart when it comes to Sophia?
Amy: I have to really work hard to not worry about Sophia's future. My future is just as unknown, really, and even though I have learned that a brain injury will affect her for the rest of her life, I am amazed at my daughters healing and general attitude she's had during this journey. She has come so, so far! Even though Sophia had to repeat the 5th grade, she is doing amazing! Texas has amazing schools, and she has such an amazing team who want nothing more than for her to succeed. This has been a huge relief, as I know many parents have to really advocate for appropriate special education services. We have had the opposite experience, which has been invaluable in setting up Sophia's academic future. I can see as we are entering puberty, more long term emotional issues that we continue to deal and work through, are presenting themselves with more frequency. I have learned to make micro-goals. Sometimes it is very centering to only have to tackle the day ahead, instead of looking at how far the road to recovery is. I feel that we are more recovered today than we were yesterday.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Amy: Yes! There are many, as humor is a wonderful way for our family to deal with the heaviness life sometimes brings. One of Sophia's Visual Perception home exercises involved putting a rubber ball with a string on it on the ceiling fan. I was then, theoretically, supposed to throw the ball in a large circular motion around Sophia as she tracked the ball with her eyes. Her little sister was watching from the couch as I was setting this up. With my first throw, I succeeded in hitting Sophia in the head with a rubber ball. This was repeated until Sophia, her little sister and I had all been hit multiple times in the head with this thing. Sophia said, "pretty sure we're doing this wrong Mom, I don't think hitting someone with a brain injury the head with a ball is therapeutic." We were dying of laughter… guess I'll have to get more detailed instructions for that exercise next time we are at the doctor.
Miggy: Amy, in your email you told me about the toll this has taken on your family--a move to be near good doctors, PTSD for your other children, loss of possessions and almost the loss of your marriage. What lessons have you learned from this crisis that you'd like to share? Is there something you know now that you did not know before?
Amy: Yes, we almost lost it all, and we did lose a lot, but we kept the most important things. Our family has come out of this battered, and worn, but stronger in our faith, and the power of believing in the impossible. We have gone to yard sales to refurnish our new apartment, and taught our children about budgets. (Ours was cut by 90%, so of course they noticed the difference. It is also their first time living in an apartment, as we have always lived in houses) We gave up everything so our children could have anything. Yes, we had to start from scratch and look bankruptcy right in the eyeball, but we have the unique opportunity to rebuild our battered foundation. We have pushed our abilities to the limit, and in return have seen the product of our hard work, blind faith, love, bravery and laughter, and have it reaffirmed that families can do anything, as long as we are together!
"Families can do anything, as long as we are together!" Amy, I think that really sums it all up. I will never stop being in awe of a mothers deep intuition--knowing really--that something isn't right for their child and they need to start asking questions and/or looking elsewhere. And while most of us say we would do anything for our children, you showed that you really would and to me, you are a true mother warrior. Again I'm so thankful you shared your story because most of us tend to think, Phew my kids are all healthy or phew, we have a good income or phew, everything is going really well, but as long as we're human beings living on planet earth none of us are ever out of the woods so to speak. Life can change in an instant and you were lucky that you were able to keep "the most important things." I'm so glad Sophia is doing well and so much love being sent her way! Thanks Amy!
I love this job. You guys, please, PUH-LEEZE email me to be featured in the Special Needs Spotlight series. I love sharing, reading and being inspired by these stories. I can't tell you how much my life has been shaped by these stories. So if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.
Mwah! Have a great weekend!
Wednesday, May 13, 2015
You know when something--an idea, a quote, a piece of art, a song--just hits you upside the head and maybe even upside the hart, and you just can't stop thinking about it? Even if you've heard it before the timing and circumstances in your life just bring it into full focus? In this way timing is like when I finally got contacts in high school. I didn't even know I needed contacts, but when I finally went and had my eyes checked and subsequently fitted for contacts I was like, What? This is what everyone else sees? Leaves? You can see individual leaves on the trees? You know, the world is just a little more clear. I think that's how timing works in our lives...we can see and hear things a hundred times, but when circumstances are just so, suddenly you're like, Oh. I get it now.
That was me last week when I read the following quote:
And now that you don't need to be perfect, you can be good.
I've been inhaling and exhaling that quote all week like clean, ocean air. The quote comes from Steinbeck's East of Eden. I read that book the year after I graduated from high school and I liked it. I still remember much of the plot and the fact that the James Dean movie by the same name is basically like the last 50 pages of a 600 page book and therefore totally inadequate. But seeing how I graduated 20 years ago--not a typo by the way, 20 years--a lot of the book has faded away, including the above quote and the context of said quote, but that's fine.
Closely related to this quote is another one that I heard a few years ago in a talk from a man who said, Beware of trying to become perfect, we don't even know what that looks like. I wrote about that talk in the context of Lamp as I was pregnant with that little bambino at the time and it really felt like an important message for this new life I was about to unwrap. That post still holds up for me. However, I also felt that it was a message for me to take to heart personally. There's a reason he said beware.. a warning should be attached to a word that is all to easily twisted.
And now that I don't need to be perfect, I can be good. Inhale. For me this has meant more compassion and less judgement. For others yes, but for myself too. See, trying to be perfect meant I couldn't concern myself with fragile, insignificant feelings when the truth needed to be heard and rules needed to be upheld. I've seen the tired movie cliche of the judgmental and hypocritical Christian who is so hell bent on doing the right thing they they are completely void of all mercy, rendering them the most unchristian of all. Yet having seen that cliche and rolled my eyes at that cliche, I still managed to be that cliche. A milder version yes, but still.
I do think honesty and rules should and do play a huge part of civilized society, just not at all costs. And of course it's this balancing act that is always the most difficult part. How do you exercise good judgement while not being judgmental? How do you teach without being preachy? Where do you draw the line between tolerance and anything goes? Like any addict, a perfection addict has some figuring out to do. How do I climb down the ledge of perfection while being good? In my tangled up mind being perfect was being good--they were one in the same. And in it's purest form I think that's true but for most of us a little knowledge, is more dangerous than no knowledge at all. Aiming for perfection before truly mastering good can have disastrous results.
So where do I start? Cussing. Damnit.
Half joking, half serious. Allowing for imperfections in myself and others is actually a good start. Recognizing and embracing humanity, seeing that I can be at once imperfect and good, has been rather healing. Like most attempts at correction I'm sure the pendulum will swing too far in the other direction before I settle back somewhere in the middle, but I'm getting there. If allowing for my imperfections makes me a little rougher around the edges, I think that's OK as long as eventually it makes me a little softer in the heart.
Anyone else feeling this quote and relate to the paradox of perfection and goodness? Care to share a quote/thought/philosophy that's been on your mind lately? I'd love to hear. Also, please don't tell me the context of the quote or the overall plot...I think it's time for a re-reading of East of Eden.
Monday, May 11, 2015
Listen up Special Needs Families! I was so grateful to the Land of Nod for helping us 'design with special needs in mind' that we are teaming up to do a $500 giveaway for a Land of Nod gift card just for all you special needs families out there. Whoop whoop!
One thing that kinda gets to me as an design/art loving + special needs mom is the often cold, sterile and supa' ugly world of adaptive equipment and accessories for people with special needs. Yes function has to be the foremost thought, but I don't think that means that good design needs to be thrown out the window. It just shouldn't be that way. And honestly a lot of the times we don't need different stuff than other families, we just need to think of it in different ways. Enter the Land of Nod, they have so many creative solutions to children's design that I think there are many ways special needs families can take advantage of this same great design and customize it to their needs. If you win this giveaway for $500 Land of Nod gift card you will also have access to their design services and will be able to consult with a designer to help address solutions for your specific needs. I hope you're doing back flips, because I sure am. Now here's how it works:
1. You must be a special needs family.
2. You can enter by leaving a comment on either the blog below and on the giveaway post on instagram (follow me on ig at thislittlemiggy). You can leave a comment in both places for a total of two entries.
3. Check out the Land of Nod and in your comment please tell me what specific design dilemma you face for your child or what your favorite Land of Nod item is.
4. Also, if you know a fellow special needs family that should enter please tag them, email them or send a carrier pigeon so they know to enter!
The contest will be open until Thursday 10:00 pm EST and the winner will be announced Friday morning. Good luck everyone!
Friday, May 08, 2015
Thank so much to everyone for all your kind words on my Land of Nod collaboration. It was so exciting for me as both a mom and a blogger. Also, special needs moms stay tuned... I've got a nice little surprise for your next week. I'm excited!
I just wanted to pop in and share this song and video that Avril Lavigne wrote for and released just for the Special Olympics. I was never much into Avril's music back in the day, but this is a great song and the video... its a bit of a tear jerker for me, so you've been warned. There are so many charities out there for celebrities to be involved in and it really touched my heart (and maybe surprised me a little?) that Avril would want to be connected to the Special Olympics. She is actually using the video and her foundation to try and raise money to support athletes who want to compete in the Special Olympics. Her goal is 30 athletes for her 30th birthday. Check out all the info here. Anyway, hope you enjoy!
Have a great weekend!
Wednesday, May 06, 2015
We've been in Cincinnati for almost a year and I'd say we're about 80% moved in. But one of the rooms that I can now cross off my checklist is PSP and Lamp's bedroom. I was lucky enough to work with the Land of Nod in putting this special room together for these two special girls and I'm super excited to do a final reveal today.
Long time readers will know how much I love watching this sister duo in action. They are typical sisters in a lot of ways I suppose, but knowing there was a part of me that once feared it wouldn't be a typical relationship I get a lot of joy just sitting back and watching them be them. That being said this is the first year we've had kids sharing a room and figuring out a design that works for 2 different kids can be tricky. Add in the extra issues of designing a room for 4 year old with limb differences who can't walk and an 8 year old who is very tall for her age and well you've got some problem solving to do. My main issues were accessibility, storage and accessible storage. And it had to be beautiful. Check, check, check and check! I think we scored a home run people!
Before the Land of Nod joined me on this project there were three main elements I already had in place. 1) The paint colors, which were a medium grey on the walls and a nude pink on the ceiling (elephant skin and cinnamon tea from Behr respectively). 2) The Coronata Wall paper hack on the ceiling. Such an easy project with a high impact and high quality result. I'm not going to do the DIY on here, because it's not my DIY but head over to Honey and Fitz for the full instructions. 3) Matching Jenny Lind beds. I had picked up a vintage Jenny Lind back in Texas and it sat in our garage for a couple years much to my husbands chagrin. Man logic: Why did you buy and why are we storing a bed that we're NOT USING. Woman logic: Because I want to have one in the girls room SOME DAY and these things don't come around very often so when you see one, you buy it. B had to fix the bed up, then I sanded and painted it. Then I purchased the toddler Jenny Lind from the Land and Nod. I bough this bed specifically because it's low to the ground and so easy for Lamp to get in and out of all by herself. Also, girlfriend rolls off the bed errrynight, so it's a good thing it's so low to the ground.
Land of Nod teepees I pitched the idea of doing a camping/outdoorsy theme for the room and Tim loved it. So did the girls! Yay! I go through the design process in more detail on the Land of Nod blog, but here's a snapshot of the Pinterest board Tim put together for us. We still made a few changes from this board for space and budgetary reasons, but this was the overall idea for the room.
And now for some good old fashioned before and after photos!
I love how this room turned out. The girls love how this room turned out.
Here are some more details.
First, the outdoor banner was one of the main inspirations for the room. I love the Wes Anderson and whimsical vibe it brings to the room. Also, as much as I love the ever popular expedit shelving unit from Ikea, we've had our fair share of expedits over the years and I'm ready to move on. Additionally, it was just too big for this corner. The district storage units are perfect. The bottom unit is the perfect catch all for Lamp's toys and books. The upper shelves are from Ikea with brackets spray painted gold and mounted on the top so they can also act as bookends. Additionally I sewed cream pom pom trim on the curtains.
Ikea mirror and painted the top and bottom white, and then used a Sharpie paint pen to give it a faux birch treatment. I wasn't sure if I was going to like the end result but I dig it, especially for a kids room. A touch of whimsy that matches the style of outdoors canoe banner perfectly.
watercolor I painted, monogram hooks, a couple of art prints and some framed cork boards for the girls to each hang their own art work on. The girls also got to help choose the bedding for each of their beds.
If accessibility and beauty came together and had a baby, it would be this room. Thanks for the love child Land of Nod!