Tuesday, March 25, 2014

Cerebral Palsy Awareness Day

Afua woke up at 8am this morning. We had breakfast (hers is pureed but not specially cooked) and got dressed. Then she played with toys, watched a Signing Times video and then we played some more. After snack, we did exercises but it's fun play for her (maybe a bit more work for me but definitely play for her).  Now she is napping and then we might head out to the store.

Sounds like an ordinary day, and it is. Unless you knew Afua, nothing in our day today is different because she has Cerebral Palsy. In fact, most of our days are ordinary and other than her wheelchair, leg braces and hearing aids, there is little about our days that are different than when my typically developing children were this age. We may do some things differently but I wouldn't say it's necessarily better or worse.

Yes, there are days that we sit in Dr offices, therapies and make hard decisions. But beyond the diagnosis, she is a child, our daughter. She makes sure we don't forget that she is a child first and foremost.

I wish that my words were eloquent enough to explain how Afua has changed our life, our world. And how there are other children waiting, today, to have the privilege of a family. I wish I could explain the conditions that these children live in and how different their life looks in a loving family. I wish I could explain that you don't have to be a superwoman or superman to adopt a child with special needs. It takes more than love, but most of us have more than love to give.

In honor or Cerebral Palsy Awareness Day, here are just a few children who are waiting for their families to find them:

Want to know more about adopting and parenting a child with Cerebral Palsy? No Hands But Ours has a great resource with information on many special needs. 
And of course, you can always e-mail me with questions.

Monday, March 24, 2014


For months we have processed Afua's hearing loss and how we should proceed. For months we have hoped for someone to give us a roadmap from the medical community but we realized that there were many different choices and many different opinions. And the best thing we could do was to pray and go with the path that brought us peace.

Earlier this week, we met with our "team" and explored the option of cochlear implant once again. Afua's CT scan makes her a perfect candidate for the implant. I was hoping we would find out also the reason for her hearing loss and we did narrow it down a bit. 

Currently the best option all around is to place a cochlear implant into Afua's left side and keep using a hearing aid in her right ear. This would allow Afua to hear speaking and begin to recognize more environmental sounds. 

The outcome of the cochlear implant will depend on so many different factors. Afua could learn to speak, it could enhance other communication tools and it could improve safety as she will hear more noises around her.And no matter what, it will improve her quality of life, which is what all the surgeries to date have done.

We will start the process next month and depending on insurance the process I surgery can be quick or slow. 

Most importantly, we have passed our fork in the road and once again are moving forward with a plan.

Tuesday, March 18, 2014

I did consider and I will wear that shirt

The article linked above has been floating all over my Facebook newsfeed. My adoptive Momma friends are sharing it, wondering if they should wear their adoption related shirts. Some are parenting children who were adopted, some are currently fundraising with t-shirts and some are waiting families. I think it's absolutely important to read with an open mind and I must say that I paused too, read the post and let it sink in for some time. These are the stories in the adoption triad that we want to listen to, and I do. This time, I am just not sure it's the way I choose to go personally.

The fact is, I have many orphan care, adoption and other awareness shirts and I am not ready to toss them aside just yet. Not because of my sense of fashion, but because of those who are left behind. The children who will never be adopted but who will need a lifetime of sponsorship and advocacy. Children with special needs who do not have a voice while hidden in cribs in orphanages.

I am also not willing to subscribe to the thought that awareness shirts immediate reveal something about my family. If I wear a domestic violence shirt, do people assume that my husband abuses me? I must have breast cancer when I wear a pink ribbon? My children must have HIV since I wear those shirts too? No, that has not been my experience.

I do choose the shirts I wear with sensitivity to my children. My children are NOT orphans, they are sons and daughters. So the word orphan does not apply to them. My son is old enough to have an opinion and he wants to wear shirts that raise funds for people in his country, he feels empowered to be an advocate. Our family does not use the terms "rescue" and "saving" our children, because that would make me their savior (which I'm not, I'm their mom). So those t-shirts are not ones I would wear. But I respect other viewpoints on this and realize that most people are willing to reconsider terminology once they are lovingly educated about it.

One day while waiting for my kids in taekwondo, I was stopped by a woman who noticed my t-shirt. It said something about feeding children and she asked more about it. We talked about different ways to help that are sensitive to children, that truly bring change to communities and she wrote the website off my shirt. Months later she came to talk to me and to me how her family sponsored a woman to go to sewing school through an organization. A mother now has a real chance at parenting her children and providing them with an education. All prompted by a t-shirt.

Afua at her orphanage in 2012. I wore my awareness t-shirt that says Go.Be.Love. 
We went, we were and we loved :)

Thursday, March 13, 2014

rock and hard place

What I have learned in the 2+ years that I have been an adoptive parent and 8ish months I have parented a child with special needs is that sometimes there isn't a good choice to be made. Sometimes you find yourself here:

We have had numerous discussions between Afua's audiologists (school and private), specialists, teachers, pediatrician and therapists. Each has a different opinion about Afua's hearing loss and how we should address it. And with each strong opposing opinion, my Mommy guilt goes up a notch. The truth is, there is no perfect solution to this. 

Afua has the choice of keeping her hearing aids turned up as they are, which causes a lot of squealing and very little benefit hearing wise. We can continue to work on modified sign language or move to other communication devices (that she can't hear but could possibly learn to  make connections without hearing). The other choice is to move to the process of getting a cochlear implant (one side or both) which could give her the ability to hear us speak to her, but that wouldn't guarantee that her communication issue would resolve. She may still need ASL or a communication device to make her needs known. 

I have read opinions that children should get cochlear implants as soon as possible so that they can have the best chance of speaking. So it feels like an invisible clock is ticking. On the other hand, there is an opinion  that children should not receive a cochlear implant but they should make that decision as adults. I look at both sides of the argument and I feel the pressure. I am caught in between the proverbial rock and hard place. 

Where we are today, is that Afua has no real way to communicate with us other than crying and other behaviors that are not positive. Many of these she has outgrown but some remain. She can sign "more" while she eats and with help, she can sign "eat". Other than that, she is often a passive participant in life and I long for her to take initiative so often. 

This decision is one of many that parents of children with special needs struggle with. We look to modern medicine to help our children and remove barriers standing in their way. But we also know there is a price to pay when making these decision. Every surgery carries a risk, every procedure is costly in more ways than one. 

If you are wondering how to support a mom like me, my advice is: just listen. Friends, acquaintances, medical professionals, teachers....be gentle. We are so hard on ourselves and second guess every decision. I know the passion is there and you can see exactly what we should do. But  let us explore every choice, let us allow the information to sink in and let us pause the process for a while. Because we are the ones who are ultimately responsible for the outcome of the decision. This is one of the hardest parts of parenting a child with special needs. 

Sunday, March 9, 2014

My Sunday Snapshot

This weekend has been the first "normal" feeling weekend in a long time.

We have just enough sunshine to feel like the snow might eventually melt.

No one is sick, we have no huge schedule to navigate.

And we went and saw Mickey Mouse. 

And Afua was in awe.

Don't forget to vote for Afua in the Great Bike Giveaway (just two clicks to nominate, no sign ups)

Thursday, March 6, 2014

the great bike giveaway

Afua is a girl on the move! She loves to be in her wheelchair or adaptive stroller. Better yet, she loves to crawl and is learning to walk.

So when I heard of The Great Bike Giveaway and a chance to win a Rifton tricycle for her, I had to enter.

Adaptive bikes are expensive. As in the $ thousands. Most have supportive seats with postural features and harnesses. The feet have special straps. A parent can push the bike or the child can propel.

I can just see Afua enjoy a bike like this while her sibling ride their bikes and scooters.

Would you take a moment and vote for Afua in the Great Bike Giveaway?

Wednesday, March 5, 2014

The "R" word

Today, 3.5.2014, I ask that you consider how your words affect others.  Some words, like retarded (or the "R" word as I call it)  is used casually but to a person with intellectual disabilities, this word is like a loaded weapon. We know that this word was once acceptable, even the medical community used it to describe people with cognitive differences. But it's time to move beyond this word, to erase it from the every day vocabulary.

My friends know I kindly correct them the first time I hear them use the word. After that they get a pause or a look. Why do I care? Because I parent a child with an intellectual disability and I love people in my life with cognitive differences. Because I work with wonderful individuals who hear the term used and it hurts them. Because I know that we have better words in our vocabulary. Because I don't want my words to become weapons. Ever.

Tuesday, March 4, 2014


Please remember to vote for Afua in the Great Bike Giveaway. No sign up needed, just two clicks on the mouse. Thanks!


Afua has been using a standing frame or a stander for several weeks now.
The device looks very basic but every part if it has been adjusted to her height and other measurements. 
There is a foam wedge under her heels to allow some stretch to her heel cords without being too uncomfortable.

This is her stander at school (her teacher sends me these pictures, she is wonderful). And before you get grossed out, the stuff on her tray is chocolate pudding. Afua was engaged in sensory play as she is still hesitant to touch sticky, gooey or cold things with her hands. Chocolate pudding was a nice incentive I think.

For us, the stander serves many purposes:
-it strengthens Afuas legs to be able to walk
-it stimulates her leg bones to also be able to tolerate walking and prevent fractures
- it stretches heel cords, hamstrings and hip flexors to make her legs straighter and ready to walk
- it gets her vestibular system used to an upright position as Afua was confined to a crib for years and mostly laid there
- it helps with digestion (hallelujah!)
- it builds endurance and with that comes pulmonary and vascular benefits

Here is a nice poster about standers and why they might be used with people who may or may not be able to walk. Our bodies were meant to stand and be upright. The most custom and comfortable wheelchair can't replace standing and what it does for our bodies. 

Afua started her stander with 5 minute standing at a time. She is now standing 40 minutes once or twice a day. She loves to be at eye level with friends and playing with toys placed on the tray. She even watched her brother's musical at school while standing. We are so proud of her and her accomplishments.

We have a winner!

Winner of the Disney Live! Mickey's Music Festival tickets is....

Tori Ludwin

Thanks for the entries via facebook and email. I will post a review of the show on Sunday.

You can still purchase tickets HERE 

Use code MOM 4 to receive $4 off per ticket ( Not valid on premium seating. No double discounts.)

To see Disney Live! event schedule, visit their website Disney Live!