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.

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.

School preparations

With 5 kids, school preparations have to start early. This year, I will have a junior in HS who is taking college classes part time on campus. I will also have a 4th, 3rd, kindergartener and an all day preschooler.

I've especially thought about Afua and how to make a smooth transition for her this year. She will have the same teacher as last year, but new classmates. Her class also interacts with another half day preschool class and they do things like show and tell together. So here are some ways I give my non-verbal child a voice:

1. Photobook

Source

I made a small photobook about our summer adventures. It will go with her to school and can stay there a few weeks as she meets new therapists or support staff. It can also help break down barriers with other students who can see pictures of our Disney World trip, swimming, blowing bubbles or playing with siblings.


2. Make the medical stuff look like non-medical stuff

Source

 

 

Afua has a wheelchair, leg braces, a new body suit (that is great, btw) and many other outward signs that she is different. But when possible, I try to get her non-medical looking things that still do a great job. Like these shoes by Plae, that are great with AFOs but are regular looking shoes. Or sometimes a shirt with a familiar character sparks a conversation with another child. Kids are naturally curious and that is fine. My focus is on the things we can make look more typical and we love pink sparkly things here anyway:)

3. Communication

We have expanded Afua's sign language over the summer. I want her teacher and aide to know all her signs and there a few different ways we could do that. Some families take a chart like above and circle the signs their child knows in one color and the ones they can sign in another. As new signs are mastered, more can be circled.

I have been taking pictures of Afua's signs since hers are modified signs and at times look different. I hope to make a little book out of it since we will be using modified ASL as her primary communication.

4. Safety

I have many safety items on my Pinterest page. Medical alert necklaces, wrist bands or tattoos are all necessary tools for a non-verbal kiddo. yes, our school has all her information but in a medical emergency. I want things to be accessible. Especially after our cochlear implant surgery, Afua cannot have MRIs done without removing the magnet that is implanted. I have ordered a few different options that we will try over the first couple of weeks.


I would love to hear from other caregivers of kids who are non-verbal: what do you do to prepare you kiddos for school?

Green light

This week, we had our final consultation before Afua's cochlear implant surgery. I had my questions memorized and went through them one by one. We talked about recovery, future MRIs (the magnet needs to be removed or specially covered to have an MRI) and what the follow up therapies will be like. 

Her surgery will be next month so we have a few weeks of summer to enjoy. After that, she will be recovering and then her CI will be activated. 

We have big dreams for Afua and feel that this is the best decision for her. At the same time, we know this doesn't cure her hearing loss, she is perfect the way she is and we will continue to teach her sign language. 

Decisions like these aren't easy, but once we have peace about what to do, we move ahead with excitement. 

Celebrating Afua

Yesterday was Afua's birthday and the first time this day has been celebrated properly.

Last year, I went to her orphanage and was initially denied my daily visit. It was raining and they deemed it too cold (it was over 70 degrees). I insisted that I wanted to at least wish her happy birthday and they finally have me 15 minutes to visit.

Snuggling with Lucy on her birthday last year. 

This year, I wanted the day to be about Afua. We did soap bubbles, she snuggled in the hammock and we played with new light up toys. She loves when the entire family is gathered around her so we all played with her and surrounded her with our presence and love.

She usually doesn't stay with one activity for long, but she was swinging in the hammock just feeling the breeze. 

Exploring the slip and slide.

Afua is progressing at a rapid pace, we see the sensory processing and integration happening so wonderfully. But most importantly, she is a family girl. She loves knowing her home base and who she can trust. Having experienced a long journey to attachment before, Afua is amazingly, securely attached early on. 

Happy Birthday sweet girl! You are the glue in our family, the one who makes sure we are ALL together. You are a blessing! 

Casting and fitting

Yesterday, Afua had her feet casted for new leg braces. So far, she has worn braces that were designed to stretch her heel cords to a neutral position for standing. 6 months later, she is now ready for more conventional braces that can be worn with shoes. 

We also had a fitting for a custom dynamic movement orthosis (DMO) that will support her core as she learns new movement patterns. It also supports her in sitting and standing which will be a huge help. 

Here is a great video to see what the suit looks like and how it helps children: http://youtu.be/kdDSU-sYo00

The process to be approved for equipment is a test of endurance but our persistence paid off. In a few weeks Afua will have new opportunities for movement (and cute shoes covering her toes!). 

Family Photo Session

After months of medical stuff and a long cold winter, I was finally ready to have our family picture taken. Since we don't do this often, I knew I wanted to find someone special to capture the various personalities in our family. With Afua using a wheelchair, we needed a spot that was accessible. With our various skin tones, the lighting needed to feature all children equally. And the person needed to have the patience to keep up with our energy, melt downs and mealtimes. Tall order, I know.

I found the perfect person for the task, but as we approached our location, it was 48 degrees and raining. Our photographer suggested an indoor location and we went with it. The result? Great pictures and a fun day spent exploring the city and riding public transit.

In this picture, Afua is in her wheelchair but it is not the focus of the image. I love the urban setting, the movement of the train and the way Afua is looking up toward me. So often in pictures, children who use wheelchairs are put to the side but our photographer found a way to have her beauty shine in every picture. 

Her sweetness melts me. How did I get to be her Momma? There are days I feel so unequipped to the task, but she loves me just the same. 

At another transit stop, we found a cool bench and the cloudy day provided the perfect backdrop. All our kids were such troopers as they knew we would get back on the train and ride some more. 

At the same transit stop, there is a covered walkway. We took Afua out of her wheelchair and she loved seeing the raindrops fall on the glass. 

My spunky girl up front, holding onto her brother who wouldn't have it any other way. And no way is my oldest taller than me. Optical illusion. I was holding Afua because we had to lift her wheelchair on and off the train. Lesson in lack of accessibility....but Eric was a trooper doing the heavy lifting.

What a wonderful day and I look forward to seeing lots of other images from our fabulous photographer. I learned that having a family story-telling photo session is the best way to go!

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.

No words needed

Afua is non-verbal. As her mom, I long to communicate with her. When she cries, I would love to know what's wrong. The more I get to know Afua though, the more I understand her body language and how she communicates with us. Looking through recent pictures, I could tell exactly how Afua was feeling.

Mom, I'm bored....where are my brothers and sisters? (This was spring break week and Afuas siblings spent a few days at in-laws)

Brother....I am not letting you out of my sight. 

Ahhhh...I got my sister back

More tickles!!!! 

Mom...I'm waiting for my lunch. 

Afua is teaching us that words aren't needed to convey feelings and thoughts. We have learned that sometimes "talk is cheap" and words can actually get in the way. Afua communicates with her whole self, she is communication. And part of my journey has been to learn her unique language. We celebrate each time she uses ASL and learns a new sign. And we appreciate all the ways that she has found to communicate with us.



Related: How to Keep Your Non-Verbal Child Safe

Words that lift us up

On Tuesday we had an appointment with Afuas Physiatrist. My husband is convinced that it's a made up specialty, but I am so glad we have this professional in our team. He is the most compassionate and down to earth guy. In his simple words, he encouraged me more that I have been encouraged in months; "Keep up the good work Mom. You are doing all the right things for her." It was just what my soul needed to hear.

Afua enjoying her evening snuggles and tickles

I am hard onmyself at times. I could be more therapeutic, fight to keep her hearing aids on more, be more creative, more energetic, more patient.... Why didn't I notice her hearing loss right away? I can live in this place of self doubt more than I should, but for now, those words from our doctor lifted me from "that place" and kept me flying high all day.

It was also our first spring feeling day an we enjoyed a dose of vitamin D the natural way and played outside. Afua and Joy played ball together. Come on spring! I hope you stick around!!

Finally!

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.

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.