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. 

Orphanage

Oh, how I hate the word orphanage.  I hate what they do to children. I often say "children belong in families, not orphanages" and it's more than just a cliche to me.

Raising a child who lived in an institution, an orphanage, lets you in on the devastating truth about what that life does to a child. The effects are long lasting and they are heart breaking. That is why I advocate for children and want orphanages emptied out.

When Afua first joined our family, I could place her in the middle of a large room and she would only move the area equivalent to her crib. She didn't know a world larger  than that existed. She didn't know about toys, music, about tickles or a brother's love. After a short amount of time, she was tired and wanted to be alone.

discovering toys

She wouldn't cry, because in an institution crying does not amount to positive attention, only punishment. Institutionalized children feel little pain, they can shut off their world to block out feelings and they stop experiencing reality. Some rock, some bang their heads, some cause harm to their bodies. That is familiar and that brings comfort. Mother's arms feel scary and unknown. 

It's hard to describe the orphanage experience without exposing what my children went through. And it's just as hard to think other children are living that reality every day.  My children are brave, resilient survivors of a life that no child should endure.

This is why I advocate. Because I went, I saw and I experienced the after effects with my children. I know more children need families. The ones who are hidden in cribs, need voices to share that they exist.Because a picture of a child that is malnourished, neglected, disabled is hard to see. And it's sometimes scary to say "yes" to the unknowns that it brings. But on the other side, a family can be a game changer.

And this can be the result:

experiencing childhood joys

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. 

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.

Finding our routine

A new school year has started and this time I really struggled to find our fall routine. We have a junior in high school who goes on college campus 3 mornings a week (and does not drive yet).

We have a 4th grader who moved to a new building and leaves a bit earlier.

We have a 3rd grader whose schedule did not change.

We have a Kindergartner who is taking the school bus for the first time with her big brother.

And we also have our preschooler who goes all day 4 days a week, does not need a nap anymore and who lost her first tooth this week.

We have spent the past few weeks in open houses, phase in days, orientations and new routines. All the children come home in waves, each excited to share what they learned and spilling their folders all over the dining room table. I returned to work and took on additional students this year, which is challenging but so inspiring. I work in charter schools in urban areas and I compare their learning environments to my children's schools in the suburbs. It is not even close to being an equal situation. I could write so much about that, but for now, I will do my best to connect with each little one I come in contact with.

So life now consists of busy weeks, therapies and appointments starting and of course Friday night football games. Soccer games are happening and we are seeing such incredible character development from my competitive son. Most days I collapse on the couch from exhaustion and I dream of a respite that actually feels like respite. Or sleeping in past 7am. Life is so busy but so so good.

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?

The surgery that almost wasn't

We are just a couple of days away from Afua's cochlear implant surgery. The last several months have been surgery and sedation free. Our days have been filled with therapies and new equipment, but relatively speaking we have enjoyed a normal, even lazy summer. Now it's time to switch gears as we know the next week will be different in a nervous/exciting way.

We stayed home last Sunday to avoid germs at church and watched a live streaming of the service.

Last week, we had a call that started a bit of craziness. Our Dr wanted to change the surgery date to accommodate another emergency procedure. I tried to come up with a plan how I could reschedule a bunch of appointments, FMLA leave for hubby, childcare etc. Ultimately it was not needed but boy did it get me worried.

Then, last Friday, I received another phone call: our insurance denied the surgery at the last minute after finding a convenient loophole in our policy. I cried....and that's all I can say about that nicely. It was devastating. Crushing. Awful. Terrible. Insurance runs so much of our life already. They decide what equipment we can have, what doctors we see, what medications we use. They tell us how many therapy sessions she needs without ever having met her. And now they were going to tell us Afua could not have a chance of hearing? Ugh. Good thing Eric was home and he went into "hero mode" and I could curl up on our couch and cry. 

Jake and Afua watching tv and holding hands...inside her new ballpit:)

The weekend had us praying for a favorable outcome. Our last hope was our secondary insurance policy that normally just helps us with co-pays and such. We requested that they would take the role of our primary insurance. Within a day (today), they agreed to cover the procedure, the implant and the follow up care!!! An answered prayer for sure.

At the county fair: peekaboo with a chicken

Many children are hearing impaired and they do not wish to have a cochlear implant. Sign language is a wonderful communication method and as you can watch in this Nick News documentary, different families arrive at different decisions. Some children wish to have it but the cost is prohibitive and that is sad for those who truly feel this option is for them.  Afua NEEDS this. She can't sign effectively because  CP affects her hands. She can't use most other communication devices because they require a person to hear. She is so aware of the world around her, we see her make connections about our life all the time. So we are relieved we get to at least try giving her access to speech sounds and enhance her ability to communicate with us. Our expectations are realistic and cautiously we dream new dreams for her.

And....we got to meet Mandisa!!! She was so awesome with the kiddos.

Would you please pray for us this week as we prepare for surgery and after care? Specifically that she would be able to come home the same day and that she would have a smooth recovery? For Mommy and Daddy's hearts as handing our sweet girl to medical professionals is always a bit unnerving? For the siblings as they also are a bit anxious about all of this? Thank you friends!

The getaway guilt

I have been in lots of phases of parenting over the years: the first newborn baby stage, the screaming toddler stage, the separation anxiety stage, the multiple kids stage, the I just moved away from family and don't know anyone stage, the newly adopted child stage, the kid with trauma behavior stage and the special needs parent stage. Yes, there have been many other phases in between, but one thing these phases have in common is that there is little to no chance for alone time or opportunity to enjoy a getaway with a spouse.  The other days and weeks, we could call a babysitter, grandma or a sibling to watch the kids or (gasp) even have them overnight when we needed alone time or couples time.  I remember being so bored one weekend circa 2001 when Emmi was at grandparents house, that I organized my closets. That makes me laugh today as putting away folded laundry makes me feel worthy of an award.

Looking through my Facebook newsfeed, I see posts reminding me that in order to be a great parent, I have to have "me time". Or date nights with hubby. Or take weekend trips alone. Or....fill in the blank. All those things are wonderful. Finding time to recharge is great. Time alone with a spouse is essential for a thriving marriage. There is nothing wrong with those things....when you are in a parenting phase that allows it.

But what if at a particular phase of parenting none of those things are even remotely possible?

What if one parent needs to stay home for the sake of children with attachment challenges or special needs?

What if you relocate away from family and there isn't a person you trust to care for your kids? 

What if your respite care provider was a no show the last three times and you are too stinkin' busy to start interviewing new ones? (I mean, it COULD happen. Or already happened. To me. In May. And now it's August.) 

Then what?

Then those articles and reminders of self care can be reeeeally counterproductive. They feed into the guilt that is already there.  Because aren't we aware of that already? Don't we know that time with our spouse or with girlfriends or alone will help us recharge? In some basic level, we know what we need even when we aren't doing it. 

But for many of us, we are in a phase where our children's needs override the needs of a parent.   There is no other choice. We know, time spent now, will allow for secure attachment later and more opportunities to resume a more normal life. Or we will eventually figure out a safe respite care provider for a non-verbal child, but now the process is overwhelming. Or we can spend time with our spouse at home, because this is a phase. A temporary phase that doesn't need a guilt trip from others. Because those who post and write the articles and opinions are rarely the ones who offer to help. 

There is more to marriage than this, but we do have more fun together than apart :)

This post is not a "how to" but an "I know". I am there, in that phase where a trip to Target is the getaway. Where you look at your spouse at the end of the day and know this hectic pace of life is temporary. You know it's a phase and one day the kids are gone and you WILL miss this. And your spouse will be there and you will take up knitting and you know it was worth it. This phase isn't the end of your marriage. This phase won't squash your self image or sense of worth. 

If you are in that "non getaway phase" with me, let's both get rid of that guilt. Let's embrace the phase and find the joy that is in the midst if it. We are where we are supposed to be. Temporarily. We may need to scroll past those articles and we may need to extend grace to friends who insist that our marriage will end if we don't do XYZ every week/month/year. And then....let's interview a few respite caregivers ;)

Vacation Pics

We have been back from our trip to Disney world for some time now. I have most of the blog posts ready to go, but I thought I'd share a few pictures from the trip.

We saw many of our favorite characters, Mulan was one we HAD to see.

And there's the collection of goofy ride pictures. Em knew exactly where they take the picture on space mountain, so we have some hilarious ones from that ride. THIS is why the Memory Maker was a great investment.

There were moments of contemplation and exhaustion. It was hot but we found some great ways to stay cool.

And this was the highlight for my youngest two.


It was a great trip, we drove lots to get there, we saw more than we thought we could and we made memories that will last us a lifetime. Stay tuned for more...