Monday, December 15, 2014

Tuesday, November 25, 2014

White Mom and Ferguson

Today, I just want to sit and listen. I don't want to debate or argue. I am not a Black person in America, but I am raising children who are. I posted this on Facebook and I am beyond blessed that I have friends who have decided to do the same. To sit and to listen.

This morning, I have many friends who are hurting. Not because of a verdict, but because of comments made here that once again prove that this country is so divided. I have two boys, I love them both equally. But one of them is 21 more times likely to be shot down during a traffic stop, a misunderstanding or a juvenile incident with the police. 21 more times likely. It hurts my heart. Many of my white friends have started their posts today with “I don’t know what it’s like to be Black in America”. Friends, we should just stop there. We don’t know. We really don’t and to try to put down someone’s feelings because you can find a justification in why a Black boy died in any case is hurtful. I have been a mother to my Black son less than 3 years, but believe me, his experience in America is vastly different than his brothers who is just months older than him. I see it with my own eyes. They both are goofy, they make mistakes but the perception and reaction from adults can be night and day different. I won’t go into details but ask me privately and we can have a conversation. Friends, I am not going to debate this issue (so please don't comment if it's to present evidence or justify). I don’t care how the evidence looks to you. But if you haven’t lived it, can you please just approach this with compassion? Please?

Monday, November 24, 2014

Cochlear Implant Day

A year ago, I sat in a surgery waiting room and was told that Afua has profound hearing loss. Immediately the options were presented, including a cochlear implant. Our year long journey wasn't without a few bumps along the way but it felt that we finally arrived with the right surgeon and team.

 In October we had the cochlear implant surgery. 

And Friday, was our activation.

Afua was in a great mood all morning, and she was so happy to see Daddy and her caregiver "T" in the waiting room. We were all there to learn about the equipment, how it all works and how to help Afua figure out our hearing world.

We started slowly, giving her a snack as sound was coming. She was curious, unsure but not unhappy. We kept reassuring her that this was a good thing. And then this happened....(you may not see this video from a mobile device, you can see it HERE  also)

It was an appointment full of hope, a bright future and reassurance that we are on the right path with our girl. She is determined to figure out sounds and hearing. She will work hard until it all makes sense.We are not expecting her progress to be the same as children without developmental delays, but we also know not to limit her. Her journey is her own and we are with her every step of the way. 

She wasn't sure if she liked it around her ear.

Tuesday, November 18, 2014

Winter Time

It's officially winter in the Midwest. I am generally ok with snow and the cold. But for the second winter in a row, I am now a special needs Momma. And that means....

This was the day before the snow came...

Wrestling this cutie into her snow pants, AFOs, snow boots (why don't they make decent snow boots for AFOs?), gloves jacket and hat. She laughs, crawls and rolls away from me as if we are playing a game. We wrestle through spasticity, dystonia and involuntary movements. I lift her into her wheelchair in the cold garage and her body becomes stiff as a board. Her 40lb frame feels like  400 pounds in an instant and I pray my back can take it. Finally, buckled in, we turn on the heater and wait for her bus. She is so excited to go and I am glad she is going to school too. It wasn't that long ago that she didn't have that opportunity, so I grumble slightly less. 

On this day, freeway was shut down due to an accident. I know some areas have it even worse.

I leave for work feeling like I just did my work out. It was my cardio, power lifting and martial arts rolled into one. Gotta love our winters! 

Monday, November 17, 2014

Fair Trade Holidays

For many years now I have wanted to leverage my dollars to support important causes when I purchase gifts, household goods, beauty products and even toys. When women in developing countries earn a living wage, they will first and foremost feed and educate their children. This is by far the most effective way to reverse the cycle of poverty around the world.

I used to think that fair trade products were expensive and not always fitting my style, but that is not the case. The Fair Trade Federation Holiday Guide is a great place to start if you are looking to see what kinds of things can be purchased fair trade. Or check out Global Girlfriend which is a website full of fair trade goodies that help employ women around the world.

This is on our Christmas list for Afua, such a great basic toy from Indonesia. Check out Down to Earth website for a large assortment of fair trade certified toys such as this one.

I love Global Mamas for many reasons, one of which is that they employe women in Ghana to make great products. They maintain high quality standards and always showcase the beauty of Ghanaian traditions in fabrics, beads and natural shea butter products. 

This calendar is absolutely gorgeous. Add a wooden animal to the handmade fabric calendar each day in anticipation of Christmas and provide a woman in Kenya an opportunity to support her family. 

Thistle Farms is located in Tennessee and employs women who have survived prostitution, addition and trafficking. All products are made in the USA.

I love colorful West African fabrics and I love my carry all pouch from One Mango Tree. It's a great way to keep your bag or large purse organized. Each product helps provide a living wage to a woman in Uganda.

These earrings are so delicate and beautiful. Made in India using fair trade principles.  Tara Project provides women and men with economic security through regular work at living wages, craft training and marketing services.

7. Rooted Necklace by Suubi, Light Gives Heat
Suubi artisans are paid a fair wage and they produce beautiful paper beads made into necklaces and bracelets. I have several Suubi pieces and I always get compliments when wearing them. I also gave Suubi necklaces as teacher gifts last year and I see the recipients wearing them often.

8. Toffee and Sea Salt Chocolate by Divine
The chocolate industry has an awful reputation for exploitation, child slavery and taking advantage of farmers. Thankfully, Fair Trade options are emerging and becoming more commonplace. I love Divine chocolate, it is from Ghana. You can find it in stores or online. Great gift option with fair trade coffee

Where do you purchase your favorite fair trade gifts?

Thursday, November 13, 2014

Things no one told me about adopting a child with special needs

Before Afua joined our family, I read many books, I researched the best doctors and hospitals and I spoke (or facebook messaged, texted, skyped...) with moms who had adopted children with similar special needs. But no matter how much I prepared, some things still took me by surprise. Maybe they never came up in conversations or maybe this is the stuff we don't usually talk about. Adoption is a beautiful way to grow a family (we had adopted before and knew this). Adopting a child with  known special needs is a beautiful journey with its unique  challenges that stem from loss, trauma and often unmet medical needs.

Learning the child's diagnosis

Those early months: lots of waiting rooms

I remember sitting at our Neurologist's office and he patiently reviewed Afua's MRI results with me. He described the areas of her brain that were affected by the lack of oxygen, that it likely happened during a certain part of the pregnancy and that in the end, the diagnosis given to her in Ghana, cerebral palsy, was correct. Hearing those words took my breath away, made me speechless as if I had no clue and this was a newborn baby with a devastating, unexpected diagnosis. I knew it was coming. This wasn't a surprise. But in that instant I grieved the diagnosis as if I had not known. Adoptive moms are not superheroes, we grieve our children's diagnoses as all mothers do. We may know what's coming when a doctor confirms the test result. But it's just as real and sad.

Then came a diagnosis I did not expect. The audiologist came to me as Afua was still in surgery.
"Profound hearing loss"
 "it is unlikely she hears speech at all"

Tears were streaming down my face as I listened to her explain waves and decibels and hearing levels. It was like a foreign language and all I wanted was to hug my girl. But she was still in surgery so I sat in disbelief. 

We are not extra tough as we process new diagnoses that sometimes come unexpectedly. When we say "yes" to adopting a child with special needs, it is not because we are expecting an easy road or we somehow are up for anything. We say yes to a child and we join their journey of medical diagnoses, different abilities and navigating a world that isn't always as accepting as we want it to be. Because we firmly believe that every child regardless of their differences is deserving of a loving home and a family. And in the midst of our "yes", we realize how much we needed them too.

 When others notice your child is different
At our first big outing, a high school football game

I remember the first time we went to a high school football game. Afua was in a stroller and I took her to the concession stand. Two little girls stood in front of us and one kept looking back. Then came the dreaded words: "What's wrong with HER?" Don't worry, I handled the situation with adult maturity, kindness and compassion (with a little bit of education thrown in for good measure). But it bothered me. It  made me sad that there were children who were not around children with special needs. Children who didn't know a nice way to ask why a child was in a stroller when they should be walking. 

The truth is, as I have parented Afua, the less I think of her disabilities. I see my daughter. I know her smiles and her expressions. We have a language and I know how her body moves. None of it is strange or unusual to me. But other people (strangers usually) will remind me that she is not typically abled. They do it by their looks, their stares and their comments. 

Friends may or may not stick around

sweet sisters

This journey is hard to understand, right? I've had people ask me why we would choose to parent a child with special needs. When you adopt, you get to pick, they say. Some have hinted that we are trying to prove ourselves to be special, faith filled or we just may not have thought this through. They know our time alone as a couple is non existent. They see the way our life is stretched thin. Some choose to continue our friendships (even thought we aren't always the most consistent company). Others have stopped asking, and that's ok too. 

What I have found is that the friendships that have remained have become so special and authentic. There is no pretending that this is all easy and smooth. They also see the absolute beauty that exists, the way Afua is changing all of us and how she is an equal member among the siblings. Those who take the time to know Afua get why she is in our family. She belongs with us and we belong with her. 

 You will doubt your abilities and it's ok

I am not an organized person by nature and it is a vital skill when parenting a medically complex kiddo. I also work part-time which makes things challenging. Afua is one of 5 children and they also have appointments and needs to be met. Honestly, there are days that I wonder how to juggle it all. In the process of figuring it out, I have learned to let go control (so hard!!!) I've reached out for help (so humbling!!!) and I have had to find organizational tools that work for me.I am still struggling with this area of parenting but modern technology is helping me keep most of my appointments :)I know I can't do this by myself and I don't have to. I have a great husband, wonderful family and friends and also a caregiver that fills in as needed. Our life is richer because we aren't doing it all alone.

You will find allies in the most unlikely places
Parenting a child with special needs means you spend a lot of time in local children's hospitals, therapy clinics, surgery waiting rooms and doctor's offices. There you will  meet
 other families who are exhausted yet so proud of their children just as you are. We give each other "the nod" and in silence we know that there are others who are walking this path too. And whether we chose this journey or we discovered a diagnosis along the way, there is a mutual acknowledgment of  the hard.

You will meet therapists who are innovative, energetic and supportive. They tell you to take a break and get a cup of coffee while they help your child achieve a new skill or make them more comfortable. You meet doctors who devote their lives to children and their families and you are not just a number. They explain things in a way that makes sense and guide you through tough decisions as if they were making them for their own children. Allies are everywhere and it makes things a bit better.

I share these thoughts in hopes that I am not alone. That others may feel the same grief, the same joy and the same purpose in parenting a child with special needs. That maybe your friendships were tested also and the invitations are fewer. That maybe your child wasn't adopted but you recognize these feelings as universal. And maybe this opens a conversation about special needs, adoption or even prompts someone to  reach out to a family raising a child with special needs.

Sunday, November 9, 2014

Sensory Seeker Toy Guide: Tactile

Many sensory products can be made at home. Like the recipe I shared HERE for peppermint playdough for the holidays. Many parent will make rice bins or bean bins with treasures inside to explore. Shaving cream or pudding play is great for tactile stimulation. There are some great toy options too. (As with my other sensory toy guides, this contains affiliate links. You will not pay any extra but I may receive a commission toward my family's sensory purchases)

1. Sensory Stix 
You can roll them between your hands, roll them all over your body or squeeze them. I put this in our church's sensory boxes and they are great! This may give a child enough input to sit still at school or at home. It's a great fidget and a toy.

2. Body Sock
They come in many colors and sizes. Pushing against resistance is great tactile input. And it's fun!

3. Tactile Doggy Play Set
This playset comes with a doghouse, a dog and bones in variety of textures. I can already think of many different games to play with this set. This is on our Christmas list.

4. Jelly beadZ
Add any plastic toys to the jelly beadz and it is a fun tactile activity.

5. Tactile Discs
I use these weekly with my students. Such a great product to use with hands a feet.

6. Squigglets
These will be our stocking stuffers. I bought one for one my kids and after a while everyone played with it. Such an affordable tactile toy!

Also check out my Sensory Seeker Toy Guide: Vestibular