Thursday, April 24, 2014

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.

Monday, April 21, 2014

Afua's First Resurrection Sunday (church and bubbles)

Who breaks the power of sin and darkness
Whose love is mighty and so much stronger
The King of Glory, the King above all kings

Who shakes the whole earth with holy thunder
And leaves us breathless in awe and wonder
The King of Glory, the King above all kings

This is amazing grace
This is unfailing love
That You would take my place
That You would bear my cross
You lay down Your life
That I would be set free
Oh, Jesus, I sing for
All that You've done for me

Who brings our chaos back into order
Who makes the orphan a son and daughter
The King of Glory, the King of Glory

Who rules the nations with truth and justice
Shines like the sun in all of its brilliance
The King of Glory, the King above all kings

Worthy is the Lamb who was slain
Worthy is the King who conquered the grave
Worthy is the Lamb who was slain

Worthy is the Lamb who was slain
Worthy, worthy, worthy 

(Lyrics by Phil Wickham)

Sunday, April 20, 2014

Product Review: Hearing Halo

Afua has been using hearing aids for 3 months now. Developmentally she is very much like a curious toddler; pulling on the hearing aids and putting them in her mouth in 3.5 seconds. We lovingly call her a ninja, she is that quick :)

This lead me to a search for different products that help children keep hearing aids on. She has been wearing a hat over the winter but it's finally warming up here so a heavy winter hat has to go.

I saw the Hearing Halo on  ETSY and I ordered two different colors for Afua. It looked breathable and something Afua couldn't take off.

It arrived in 2 short weeks and we tried it last weekend. Afua did not try to take it off and it seemed very comfortable. 

I was trying to take a picture as she is grabbing my phone :)

Last Monday, I sent it to school along with her hat and waited for her teacher and aide's verdict. They seemed to like it and have used it daily since then. At home, it gives me the added security that her hearing aids don't end up in her mouth, a potential chocking hazard. The product is well constructed and it is easy to clean. 

Keeping hearing aids on a 4 year old who is developmentally a curious toddler is a challenge. Most products are babyish and it poses an issue with dignity. Hearing halo is an excellent choice for us as it different from the baby products on the market. And I know as Afua gets bigger, I can order a larger size that does the job well.

Thanks you Hearing Halo for making such an awesome product for my girl!

Disclaimer: I review products that I feel are beneficial for my family. Some products I receive for free to try, others I have purchased to try myself. Either way, opinions and experiences presented are 100% mine.

Walking With Dinosaurs

It's hard to put into words how excited my family is  to see Walking With Dinosaurs. The video clips we have seen are awesome but I can only imagine  how much more spectacular it will be in person.

The show depicts the dinosaurs with almost cinematic realism. WALKING
WITH DINOSAURS THE ARENA SPECTACULAR has scenes of the interactions between
dinosaurs, how carnivorous dinosaurs evolved to walk on two legs, and how the herbivores
fended off their more agile predators.

The Christian Science Monitor said, “When the dinosaurs start pouring out onto the stage,
if you don’t have to stifle the natural flight response of any living breathing being, then
it’s your pulse that needs checking.” Newsweek called the show, "that rare entertainment
beast that parents and kids can enjoy together."

Walking With Dinosaurs returns to Quicken Loans Arena July 9th-13th. 

Buy your tickets to the Cleveland Show HERE

Opening Night Tickets start at $25

  Disclosure: In exchange for my time and efforts in attending shows and reporting my opinion within this blog, as well as keeping you advised of the latest discount offers, this show has provided me with complimentary tickets and opportunities to attend private pre-Show events. Even though I receive these benefits, I always give an opinion that is 100% mine.

Friday, April 11, 2014

10 free ideas for a fun summer

This summer, we plan to visit a certain famous mouse in Florida, so the rest of our summer needs to include cheap or free fun. Preferably free.  I started bookmarking and pinning potential summer activities and hopefully these help you as you plan your summer too. Last summer I was in Ghana for over 5 weeks so I feel like I missed our usual activities. This summer, I have some catching up to do.

I start by printing blank calendar pages like this and as I find fun events, they are all marked in one place. The goal is not to do something every day, but to have ideas for those days that swimming isn't an option or we just want to break the routine a little.

1. Free Zoo and Museum days

Our Zoo is free every Monday and several museums are free on designated days. We usually visit our zoo from opening for 2-3 hours and pick an area to explore with detail. It makes our visit more relaxed, less walking for the kids and we want to return week after week.   Here is a tool to locate a Zoo nearby.

2. Swimming

Do you have a local beach, lake or community pool? We have free places within 30 min drive where we can enjoy a day of swimming and a picnic. We also buy a family membership to a local pool because it has a nice shallow end for the little ones and they offer swimming lessons. I once calculated how much the membership cost us per visit and it was 75 cents per trip (for 5 people swimming usually). We plan to get a season pass again this year and also visit local free swimming spots. This option isn't free but for 15 cents per person, it's worth mentioning.

3. Library/reading programs

Our library has a fun reading program and children can earn free stuff for reading books. We sign up in May and keep a record of why we read and for how long. While at the library, see what other programs they may have. We have attended magic shows, crafts and other in activities while checking out books. Bookstores such a Barnes and Noble have programs also, check out their websites each year for free programs. We write the events into our summer calendar and go especially on rainy days.

4. Concerts

Does your community offer free outdoor concerts in the summer time? We go to many concerts each summer, take a blanket and listen to music under the stars. Not only is it a fun family outing, our kids get out of their usual music rut. We pick anything from classical to jazz to African beats and pack a picnic dinner along. An since it's outdoors, kids can dance and clap along.

5. Movies

For rainy days, we keep a list of $1 movies handy (written into the calendar). These are usually played early in the morning and they are older movies, but since we don't go to movies that often, it feels like a special treat to my kids. We also look for outdoor movies in our community which are super fun and free. Sometimes an ice cream social is included which my kids look forward to.

6. Parades and Fireworks

Another fun summertime tradition is to attend parades and fireworks. These are around 4th of July of course, but many communities around here choose a different weekend so for a couple of weekends we can enjoy beautiful fireworks shows. Parades are super fun and my kids love seeing matching bands, fire trucks and of course they are hopeful for some free candy.

7. Playgrounds

This may be not be revolutionary but we do utilize various playgrounds for summertime fun. Pick a different playground, invite a friend or two to join you and it is a fun day for sure. Some parks have a splash pad as well which can help kids cool off while moms relax (hopefully) or join the playtime.

8. Geocaching

This is a new activity for our family. But one we will be doing this summer. I found many geocaches nearby from this website

9. Local sporting events

Do you have a minor league team within driving distance? Check out their kids club or family games for low cost or even free tickets. Last summer we scored tickets for our entire family for $12 to a local minor league baseball game. Kids were excited to watch the game, visit a kids bounce area and there were no parking fees, long walks from the parking lot or $8 hot dogs. It was great. Some even offer fireworks after the game, kids can run bases or meet the players.

10. Organize a neighborhood summer camp

The best moments of summer are often spontaneous and happen at the last minute. It could be as simple as bringing out the slip n slide and inviting a few friends to join. Or a few moms can organize a day of summer camp activities to change the routine of summer a bit. I find that inviting a few friends over changes the dynamics between siblings and we tent to have less squabbles.

Pinterest has tons of ideas on summer time backyard activities with easy to find supplies. We plan to add many of these ideas to our summer bucket list.

We are gearing up for a fun summer! 

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

Tuesday, April 8, 2014

Orphan Care

After our family's 6 trips to Ghana and 5+ weeks living in the midst of orphan care last summer, I have had many thoughts swirling through my brain . For 8 months I have struggled to put these thoughts into a post.  I am a Momma to 3 children  who lived in institutions and the effects of that life is evident every day. Sometimes it's subtle and sometimes very prominent. So I've been thinking how to approach orphan care so that is sensitive to children, makes a lasting impact and reverses the cycle of poverty. Here are some things I am currently processing...

Moms and their babes in Ghana

1. Orphan care = Caring for Orphans

Sounds simplified, but this is where most of us start, definitely where I started. We become aware of millions of children who are labeled "orphans" and we feel compelled to help. Before jumping on a plane or adopting a child, my biggest hope is that we would educate ourselves  about orphans, who they are and what they need. In fact, most orphans have parents, grandparents or aunts/uncles who love them but can't for a variety of reasons to care of them. So the proper term for orphans may indeed be "vulnerable children" and there is so much we can do to keep these children connected to their families. That's the ultimate goal of orphan care, that there would be no more orphans. Some simple things we can do from the comfort of our home: pray, sponsor a child (email me and I can connect you with many wonderful organizations), support people who are working with vulnerable families and educate others about the condition of children here in the USA and overseas.

Emmi stocking shelves at the Fern House, a maternity home in Ghana. Helping vulnerable moms is definitely "orphan care"

2. Orphan Care does NOT  = adoption
Adoption is one part of orphan care and I do believe in the restoration and healing power of a loving family. I have 5 amazing children, 3 of them joined our family through adoption and I have parented them through their grief and healing. But too often adoption is seen as the first, best and only choice. In Ghana, 80-90% of children living in orphanages have families, they are not orphans the way we imagine them to be. So if you were to visit an orphanage there, don't assume adoption is the best  choice for most of them. Maybe the children need school and food sponsorship to return to their families? Maybe their mother needs a micro loan to get back on her feet? Maybe the parents/village need education on special needs or medical sponsorship so a child can live with their family? That's orphan care that makes more sense for most kids. And then, there are those children that need a new family, the 10-20% who have no other option ( and worldwide, 95% of orphans are over the age of 5, part of a sibling group and/or have moderate to severe special needs). Adoption makes sense for them, but please let a qualified social worker decide that for the child. Let every other alternative be sought for that child before they are uprooted. It's a painful journey for the child as well as the family and we must be ready to some day explain to that child that we explored every other option before adopting them.

Emmi washing baby equipment

3. How to visit orphanages in a child centered way

Over the summer, the orphanage that Afua lived in for the past 2 years would get a steady stream of tourist visitors. They would bring donations and then many times they asked to see the children. Their cameras were around their necks and sometimes they were allowed access to the children. Pictures were taken, kids received treats and hugs were exchanged. I spoke with many of these "orphan tourists" and they readily admitted a stop at an orphanage was a quick part of their trip similar to a visit to the Elmina slave castle, the art market and other tourist destinations in Ghana. Other orphanages allow week long visitors, repeat visitors and pop in visits as they know this is vital for their operations. This can be done in a child centered way or it can also be done in a way that leaves children with continual broken hearts. My biggest advice is to approach a visit in a way that allow the caregivers to maintain their role while supporting them behind the scenes. What are the tasks that are always in the back burner due to taking care of the children? Do the dishes, sweep the floors, help with inventory, fix anything you know how to fix or find your unique way to be an asset, not a tourist. If that is your focus, I am sure your time will be spent wisely.I would sometimes do a pop visit to an orphanage to deliver a package from a child's adoptive family. I consider that an honor and an exception to the rule. Each time, it helped the child know their family was coming and brighten their day. But more often, it's more meaningful to have a long term supportive role that lifts up those who do the daily work long after my trip is done.

Emmi's hard work was rewarded with advice from a special auntie. 

4. Long Term View

Orphan care should not be a one time mission trip or one Sunday topic at church. It's a lifelong commitment to helping children who are vulnerable. Why should we care? Because one day these children are the adults of the world and we want this planet to be filled with well adjusted, attached adults. Statistics show that children from institutions are more likely to commit crimes, become victims of human trafficking or repeat the cycle of poverty and orphan-hood. And just so we don't kid ourselves, institutions exist here in the United States as well. We don't call them orphanages, they are now residential care facilities. As those teens age out, we want to be sure they can enter society in a well adjusted manner and that each child has a family they can go to for support, advice and love.

Orphan care is so much more than adoption. There are thousands of children in Ghana who are vulnerable and only under 200 children children are adopted to the US each year. Adoption alone will not solve this issue.  Let's all find our piece of the puzzle and become part of the solution. 

Friday, April 4, 2014

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!!