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

Sensory Seeker Toy Guide: Vestibular

Are you building a sensory room in your home or trying to find a holiday gift that offers sensory benefits?  Here is a guide to help you choose durable and affordable options for every sensory need. I recently helped design our church's sensory room (every church should have a sensory space) and I also consult with the schools I work in frequently. So I have tried many products over the years and know which ones will last. I also have many of these at home for my sensory seeking kids to use. Today, we will focus on vestibular sensory toys.

Vestibular Sensory Seekers

Vestibular sensory seeking kids love to spin, bounce, flip and crash. They are found doing cartwheels, watching tv while standing their heads or they might just spin their way down the street. They crave input through these movements and sometimes need it to regulate themselves. Offering these activities during play time will result in a calmer kiddo who is able to focus when needed. My kids from hard places love vestibular stimulation when they are about to become dyregulated. A few bounces on the trampoline or  swing time will help a situation from spiraling out of control. And I might add that most kids benefit from these toys to develop their large motor skills. (disclaimer: the pictures contain affiliate links, but you will not be charged anything extra, it will help my kiddos finally get item #5)What are your favorite vestibular sensory toys?

Also, check out the Sensory Seeker Toy Guide: Tactile

1. Mini Trampoline
There are many different kinds of mini trampolines, I like this one with handles. I use it in two of my schools and my students love it. Jumping is a great activity for vestibular stimulation and self regulation. 

 2. Spin N Saucer
Once kids outgrow their sit n spine, this is a great next step. I have one child that can't spin enough so we have various toys to give her that spinning motion.

3. Indoor Doorway Swing
We have had this particular swing since September and it is by far the safest and most versatile out there. We have a net swing and trapeze attachments for our needs, but you can also get a ladder, rings, platform swing and many other accessories. It is great for apartments if you can't attach something permanent on the ceiling.

4. Green Horse Hopper
Such a great toy for getting that bouncing motion. Safer than an exercise ball for independent use. You can also lay this horse on its side and use it as a balance or core tool for smaller kids. Durable and inexpensive!

5. Crash Mat
I have this in some of my schools and it gets a lot of use. You can jump, bounce, lay, crash, crawl and anything else you can think on it for sensory input. It is on our wishlist for Christmas to add to our sensory room.

6. Teeter Popper
There are many versions of this toy out there. This one is the most affordable yet durable version I have found. Wooden ones are 10X as much, but this one will get the kids rocking and spinning while sitting and standing on it.

Friday, November 7, 2014

Holidays using our senses

Now that our clocks have been turned back and the darkness comes earlier, my mind turns into the holiday season that will be here before long.

Last year, Afua was still adjusting to life in America and all the medical procedures we had going on. This year, our cochlear implant activation is just around the corner but otherwise life is predictable and safe for her. I want the holidays to be special and full of memories for her just as they are to all of us. So here is how we are exploring the holiday this year using all our senses:


Fresh pine trees, pumpkin pie or peppermint sticks. We all have memories associated to the Thanksgiving and Christmas holidays. How about ginger bread cookies? Yum.... Our sense of smell guides us and reminds us of years past.

- candles, oil burners or even air fresheners are great in creating a festive mood

- scented play dough is a favorite here as it provides a sensory experience along with the scents of the season
- you can make potpourri on the stovetop or even put Apple cider in the crock pot with cinnamon sticks. The scent will permeate the entire house 

-bake cookies and the entire house will smell like Christmas

We all have our favorite images of the holiday season. A lit Christmas tree, stockings hung by a fireplace or mounds of snow. 

-start decorating the tree a bit early, use twinkly lights and shiny ornaments. Lay on a blanket and look up at the tree. Quite a bit different than our usual view.
my tree isn't this perfect but there will be lots of colorful lights

-take a ride looking at neighborhood lights or storefront decorations

I get misty eyed by certain Christmas carols each year. There are so many sounds of the season to explore.

-Play games of guessing Christmas sounds: jingle bells, snow crunching under shoes, wrapping paper crinkling, drumming like the little drummer boy, different animals in the barn welcoming baby Jesus, candy cane snapping. 

- Play Christmas carols around the house

- read the Nativity story out loud, we also like T'was the Night Before Christmas 


There are so many wonderful tactile activities that can be made specific to the holidays. Many children explore the world through touch, especially if they have any type of visual impairment.

- explore the textures of the season: pine cones and needles, snow, cookie dough, wrapping paper, hay, candy canes or ornaments (plastic)

- make gingerbread houses exploring the sticky textures of frosting, candy decorations and the smooth cookies

- there are many textured books about the holidays also depending on your traditions 


This might be my favorite way to explore the holiday season. Depending on your child's ability to eat and allergies, use these ideas as a springboard to lots of fun.

- use the flavors of the season such as peppermint, egg nog, apple cider, gingerbread, cranberry or pumpkin  to play guessing games, incorporate into meals or offer as snacks

- bake cookies and enjoy the freshly baked goodies

- we make cookie dough without eggs and let the children mold it, roll it and even lick it. These won't be our official Christmas cookies (because....yuck!!!) but it's a wonderful multi-sensory experience 

yes, I let my baby lick cookie dough.....don't judge me :)

Holidays can be full of memories for all children. Focusing on their strongest senses will help to make special memories and fun activities for the entire family. 

I would love to hear how you make your Thankagiving and Christmas (or any winter holiday you might celebrate) sensory friendly for your loved ones? Comment here, on facebook or email me at joyfuljourney4me@gmail.com 

Sunday, November 2, 2014

What do the orphans really need?

The word orphan can be so emotionally charged. A child growing up without the safety net of a family, alone, hungry, vulnerable. Isn't that what we think when we hear the word? Orphan is also an immigration term that is used in international adoption. Orphan status is achieved even if a child has a living parent, but that parent is unable to care for them. And what about our foster care? These children are orphaned into a government system but may have a biological family unable to care for them safely. But there is a family nonetheless.

So what do the orphans (or vulnerable children)  really need from us? (Us meaning adoptive parents, potential adoptive parents, concerned advocates or those involved in the care of these vulnerable children). 

1. Families who will CARE for them
Adoptive families are needed. Desperately. They are needed in foster care to provide a safe place for a time. They are needed in domestic adoption and international adoption. For children, who have no other option, adoption is a gateway to safety, support, stability and love. Family is an important social unit that can't be replaced by institutions. So families are needed to step up and open their hearts and homes. 

Daddy's girl since day 1

2. Adoptive parents who will FIGHT for them.
Adoption starts with loss and trauma. Children need well trained, well educated parents who will research every possible resource and counseling and treatment to journey with their child toward healing. The best thing I did was to imagine the absolute worst that could happen (sexual abuse, violence, attachment problems, medical conditions..) and what I would do in each situation. Our social worker suggested that and I allowed my thoughts to "go there". For a moment, I took off my rose colored glasses and stopped skipping through the tulips. What would it be like living with a child that hated me? That had behaviors that would upset our other children? We have had unexpected bumps on the road and it's not always because of children who have experienced trauma. I haven't always attached properly and I haven't always used the right parenting techniques. It's not about being perfect, it's about endurance.It's about reaching for resources and not giving up. Is every adoption a perfect match? No. but vulnerable children need parents who will ensure that they will do whatever is needed. Until.

I am thankful he allowed me into his heart. We have learned to trust together.

3.  Adults who place the child's best interest first.

Before we even get to the point of adoption, a child needs a set of professionals to determine what they need, usually a representative in their home country (orphanage director, social worker etc) and an entity here in the US. Some children need temporary help when a family is going through a crisis. Some children need an adult to find their families and reunify them. Some can be adopted within their own country. Some (hopefully the smallest possible number) will need international adoption. Adoption agencies exist for the sake of adoption, which is not a bad thing. But are they really the most unbiased way to decide what is best for a child? If I go to a surgeon, more than likely they will recommend surgery. It is what they do and what their focus is. Will they always suggest surgery? No, but often they will. Same with the agencies. They see the beauty of adoption, the financial benefit of adoption and they rarely have anything else to offer. Family preservation is an afterthought or a small program to give back to the country they work with.So vulnerable children need someone who can examine their situation without any financial benefit if the child is placed. The best way to care for orphans is to prevent a child from becoming one.  Domestically, expectant mother need the same support through counseling or social services before an agency or adoption attorney is in the picture. 

4. Adoptive parents who are willing to WALK AWAY.
In our early days of adoption, we said a lot of NOs. Agencies that didn't feel right, children that didn't seem to need adoption, countries that had high corruption. But once we found OUR children (I was foolish to even use that term so early in the process), I don't know if I could have walked away. And I have watched families complete adoptions and live with lies. And figuring out the aftermath of raising children who had parents but maybe few resources. Many wish they could have been there before the family's tragedy began, but most felt hopeless to do anything but complete the adoption.Part of adoption is walking away, or supporting a child in a different way that originally thought. Or refusing to participate in practices that creates orphans. 

I have spent time with birth mothers/first mothers in Ghana. Not all understand what happened to their children. Not all understand the permanency of adoption. Some are asking about their children and expecting them to return. Those conversations haunt me. Mothers are hurting and missing their children while we think we are adopting orphans. My brain doesn't reconcile that. At all.

5. People who will ADVOCATE for them

There are many children that need families. Maybe not 152 million as often mentioned, but there are too many. Children hidden in cribs in Eastern Europe. Children with medical needs all around the world. Children abandoned due to cultural beliefs. Children in foster care and in residential facilities in our home states. They exist, they need an army of people searching for families for them. To make the invisible children visible. Advocacy is just as important and noble as adoption itself. Advocacy should be on every adoptive parent's mind long after their OWN children have joined their family. 

I visited the orphanages, I saw it with my own eyes. The sounds, sights and smells of 30 children with special needs living in one small room never leave me. I should do a better job in telling their stories. They need all of us to do a better job.

There are no orphans in this picture. There are beloved sons and daughters because they have a family that loves them. Forever.

This is why I believe in adoption. Because some children despite all efforts, can't stay in their home countries. They need a family or they wouldn't survive. There were people who investigated Afua's background, others advocated for her, some gave financially and we adopted. No one thing was more important than another. But I must say, I get the best part: I get to be her mom.