The most powerful word

Sharing a post from last year that still applies to my life today....


Afua doesn't walk....yet

Afua isn't communicating with signs....yet

Afua is not drinking from a cup....yet

I find myself  using these phrases at doctor's appointments, school meetings, discussions with friends or relatives. I can't seem to say the first part, without adding the word yet. I wonder if my yet is viewed as a mom who is unhappy with the way things are or if they will truly understand my feelings behind using the word yet. 

 Right now, the word "yet" gives us power to hope for Afua's future. It gives us permission to say that we know more miracles are around the corner. That the hours she works so hard in therapy each week are for a purpose. And we hope that she will get to experience new things as a result of that hard work. 

Yet, if nothing changes, if nothing improves, if life tomorrow is exactly as the days before, she is loved just the same. Her performance is not a measure of her worth. 

So I guess this is really the heart of parenting a child with special needs. We live in the moment, we hope for the future and we constantly worry that our moments with our kids are cut short. Balancing all these feelings is 90% of my journey.

Sensory Fun for February

All kids benefit from sensory activities, but I've noticed that my children with trauma and special needs absolutely require them. Our play room is slowly transforming into a sensory friendly space with a swing, trampoline, wobble boards and activities for gross motor movement. We are also focusing on tactile sensory activities to do with our younger ones and I wanted to share our February project.

 

This is my favorite play dough recipe, it's safe for all my kids. Today, I added just a drop of food color (not needed if red dye does not agree with your child) and a dash of vanilla. My daughter thought it smelled like cupcakes.

top: with glitter, pink created with 4 drops of red food color, purple was 6 drops of red, 3 drops of blue

Some of these things I picked up at our Target dollar spot, others at a local craft store. Just make sure the items you choose are age appropriate and don't pose a choking hazard.

cookie cutters, pom poms, heart shaped pony beads and spikey balls

We used our dough today to make cookies. Rolling dough is a great "heavy work" sensory activity.

Even our boys got in on the action, this recipe makes lots of dough for all.

the spikey balls made fun designs on cookies

This was a great sensory activity. Kneading and rolling dough, using cookie cutters, various textured "toppings" and the smell of vanilla dough kept my kids busy for an hour. Perfect for a cold, snowy day. 

Cochlear Implant Surgery

After our failed attempt at cochlear implant surgery in August, we consulted a new surgeon at a different children's hospital. It felt right to get a fresh start after so many glitches occurred at our first one. Our new surgeon has completed 1200 cochlear implant surgeries and the office staff was helpful and experienced.

After our hospitalization earlier in the month, I feared our October 20th surgery would be postponed, but we received all clearances in time to move forward. Afua was healthy, her strength was returning and we felt an overwhelming peace about the decision.

enjoying some pre-surgery snuggles

On October 20th, we woke up early and made our way to the hospital. While I didn't want her to have a yet another surgery, this held much promise. 

happily waiting

Everything went smoothly and her implant was tested under anesthesia. It worked well which was a relief. We received our suitcase of technology and a brief explanation by the hospital audiologist.

Before long, Afua woke up and we went home. She was very nauseous the first day but the second day she was comfortable. We stayed home from school the rest of the week and she will return to school on Monday.

a get well bear got her smiling

snuggles

we named him "the most expensive stuffed animal that includes a cochlear implant as a bonus gift"

Our activation will be November 21st and I am not sure what her reaction will be. Afua has had profound hearing loss in her left ear and severe hearing loss in her right ear since birth. She can hear some sounds from her right ear but she has never heard speaking (at least not clearly). This may be frightening or this may be exciting to her. Knowing Afua, she will display her usual determination to figure it out.

 Will she be able to speak in the future? We don't know, but we sure can dream. 

What an October

This month has been different than I ever imagined. Instead of pumpkins and apple orchards, it's been hospitals and surgeries. But that's the way life goes sometimes, especially when you parent a child with medical or special needs.

A few weeks ago, Afua began to have staring spells and we suspected focal seizures. Teachers and therapists all saw them and we made an appointment with our neurologist. they couldn't get us in for 10 days so we waited and documented the seizures.

cutie pie always ready for road trips

Before we could get to that appointment, we had to be rushed to the ER and admitted to the hospital. She was having a hard time, we just didn't know with what....

EEG leads were in and we waited for results

Within an hour, the EEG picked up seizure activity and medication was started.

At the hospital we discovered that Afua had been bleeding in her stomach for weeks and this imbalance was bringing forth the seizures. We were in good hands and a quick procedure was performed under anesthesia. 

most of the days her eyes were closed, this morning i was able to see her eyes

Once we were home, I was sure our cochlear implant surgery would be canceled, but our surgeon was comfortable with us going ahead. Flu season was approaching and the surgery needed to happen before then. We had two weeks of blissful happiness at home before the surgery.

within a day at home, she was happy again

snuggles with daddy

Today, we are home after a successful cochlear implant surgery and Afua is recovering well. In the coming days, I will tell you all about it.

Parenting a child with special needs is unpredictable. I am grateful for the timing of all of this though, we absolutely needed to know about Afua's bleeding before we had the cochlearn implant surgery. Now that it's diagnosed and under control, she is more comfortable and happier than she had been in weeks, even months. 

The sibling of a child who has special needs

We adopted Afua 14 months ago and she is our first child with a visible disability. I often think how our life has changed in the last year, the good and the challenging. Medical equipment, considering wheelchair accessibility of various places, appointments and surgeries have all become a frequent part of our every day life. Our four older kids have gone through the changes along with us and I have worried if they would resent their little sister or our decision to adopt her.

Jake is my compassionate kid and it was no surprise that he became a caring big brother to Afua. Her smile is all he needs to be happy.They have developed a special bond.

Sometimes people assume he is the child most affected by our adoptions. After all, he was the baby of the family and now he finds himself as the second oldest out of 5. Sure, I can't be a room mom at school or come to every class party. I may be at therapy appointments or hospital more than he likes. There are sacrifices that all of us have made to make room for more children in our family. It happens in biological families too as a new baby arrives. But the changes in Jake over the last year have been so evident and I think he is growing into a wonderful young man.

Afua's bus comes first each morning and he comes outside to spend time with her. They play basketball together (she passes the ball and he scores but he always high fives her for a great assist). Last year, when they were in the same school building, he would stop and give her a hug and kiss several times a day. He doesn't have to do any of this, but this is how he wants to spend his time.

I grew up with a younger brother who was hospitalized for weeks at a time. I know how that breaks the familiar family routine, causes parents to be preoccupied and everyone to be worried. I also know the other side, the side that shaped me to choose a helping profession, to care about the people who have a disability, who are different and who are the outcast. I learned to be patient with people who take longer to communicate and I knew the value of friendships with everyone. Jake has learned that at the age of 9. Many adults have not.

After his first day of school this year, Jake excitedly told me that his classroom is across the hall from the "children who are like my sister" (his words). He spent his recess with two students who use wheelchairs and told them he has a sister who uses a wheelchair too. No hesitation, just pure acceptance.  While he has always been a compassionate child, he now knew how to interact with a non-verbal peer and undoubtedly he is teaching his classmates about that too.

Having a child who has a disability can be seen as a tragedy and a burden.  Those unfamiliar with our life can feel sorry for Jake (or our other children). They may feel sorry for Afua because of all that she's been through. But in their pity, they fail to see the beautiful and there is so much beautiful. There is nothing more tender than a little boy's sweet good morning song to his sister. Or the way her face lights up as she sees him returning from school. And while there is so much hard and sad and worry there is the other side too. A little boy who is learning about life right in our home. And his sister, who the world thinks can't contribute much, is the ultimate teacher to all of us.

A year ago

Edited to add: I have received emails asking if there were any ethical concerns with our adoption based on this day's events. To clarify, the US Embassy did not suspect that we submitted fraudulent documents. Ultimately all our documents were verified as authentic and we were closely involved in obtaining them. But there had been cases before us with falsified documents and that is why there is an increased concerns with certain adoption professionals. 

365 days ago, I was in Ghana waking up before the sunrise. It was the day of our visa exit interview and by all indications it should have been a day of celebration. Afua had her passport, we had jumped though all the right hoops and all we needed was her visa printed on the passport.

I approached her orphanage with my friend who drove me there. The staff was not in the office so we waited for our power of attorney (POA) to arrive. Once he arrived, he called for someone to get Afua dressed. I had to fill out paperwork promising to bring her back and they sent an auntie with us (as a security guard I guess). I was running out of grace with the orphanage and the way they treated me, but I put on a happy face and scooped my girl up.

Afua sitting with our dear friend

We got to the US Embassy gate and the line wrapped around the building. Along with hearing adoptive cases, this day they also had visa interviews for Ghanaians hoping to come to the US for various reasons. The problem was that I was holding a 30 lb sick child who couldn't as much as hold her head up and the line was going to be looooong. 

I was told I could give money to the security guard to use his chair but I gave my POA a glance that indicated that I would rather stand than pay a bribe. Sorry, the Finnish stubborn side of me rose up as I saw a healthy security guard sit in his plastic chair as he watched me carry and hold a sick girl right next to him....grace...grace...I kept telling myself that over and over again.

Finally another security guard approached me and asked me why I was there. He let me in the Embassy so we could sit. My arms were numb and shaking and I'm not sure how much longer I could have held her. 

Once inside, we dropped off documents at the window for our visa exit interview. I was not aware but our POA submitted a document I had not seen before which would prove to cause a lot of confusion for our case.

As we sat and waited, Afua became increasingly distressed. The auntie sent by the orphanage couldn't tell me anything as she didn't usually care for her. Before long, Afua vomited all over herself, my dress and the chair next to us. The crowded sitting room cleared around us, no one wanted to ruin their clothes:) I don't blame them.

Finally I heard my name called. By the time I approached the window, my POA was already there. They seemed to have a spirited discussion about a previous case and finally the attention turned to me and Afua.

The embassy wanted to verify all documents in our case as there had been fraudulent documents presented previously. Also, the one document our POA submitted had a different age for Afua which raised additional concerns. It was this inattention to detail that was now causing a wait in our case. 

I was devastated to hear that we were not getting a visa that day but we would have to wait until the embassy would call me with their decision. They knew Afua was sick (they could see it as she seized in front of them) and it seemed they would proceed quickly.

365 days ago was a day that ended in many tears. Friends called, texted and messaged encouraging words and truths. Eric and I made long term plans for me to stay in Ghana. And once again, I returned my girl to the orphanage where she would lay in her crib. 

But the story doesn't end here...however devastating that day was, there was a happy ending. You can read about our last days in Ghana HERE...

gait trainer

We have had a prescription for a gait trainer for some time now. We have submitted it to insurance and we are in the process of obtaining one knowing it will be months before anything happens. Our home equipment provider lost the fax, it was re-faxed, then they needed more info from me, then we needed doctor's stuff and then came the first denial. It's just one item on a list of 10 things and we end in this endless loop waiting. I know I've written about it before, but it just keeps happening.

The sad thing was that Afua was ready. So ready and loves to stand upright. They got her a gait trainer at school but it is not quite perfect. But she loves it and wants to be up.

Out of the blue, I got a picture and a message from a friend who works with children with similar conditions as Afua. She asked if we could use a gait trainer for her as they had one that wasn't currently used. Yes!!! And a few days later we made a trip to try it out.

I am constantly amazed how all of Afua's needs are provided for. Each and every need is met so specifically and it is such a blessing.

We took the gait trainer for a trial walk in our drive way and we will have a great summer! We can keep it until our insurance finally approves one, or Afua's needs change.

Go Afua!!!

Frustrations of a SN Momma

I try to keep things positive. Most of the time. But oh my goodness, the world of parenting a child with special needs can really be so frustrating at times.

Insurance companies can determine what my daughter needs. Like a chair according to Mr Insurance (that cost $$$$thousands, but that's a whole 'nother rant) is not necessary, because she has a wheelchair (that they didn't purchase, someone gave it to us). Who cares if the wheelchair is always in our garage or at school with her, never inside our house for many reasons. Or a bodysuit that would support her core muscles and allow her to walk, is not needed. Because it's "experimental". Even though we have tried it at therapy for months and it makes a HUGE difference.


Buy a swing for a baby and it's $20. Buy a slightly bigger and stronger swing for a child with low muscle tone and it's hundreds of dollars, if not more.

Buy a trike for a toddler and it's $20. Buy it for a 4ish year old girl who needs additional supports and it's $2500.

I get that equipment for Afua is expensive. But having her grow and develop without the opportunity to move will be much more expensive in the long run. 

Every mom who parents a child with medical needs or developmental delays just wants their child to have the best chance to grow and develop. We are mostly reasonable people who are not asking for the moon. We fill out form after form appealing to the common sense of someone in the insurance company, our therapists fight right with us filling out equal amounts of paperwork. We will not give up no matter how frustrating it gets (just in case my insurance company reads this, I WILL file every appeal possible)

When I reach the point of total frustration, this sweet face brings me right back. She is worth it. Every bit of the hassle.

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:

image source

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. 

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?

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.