Friday, August 22, 2014

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

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

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?

Friday, August 15, 2014

The surgery that wasn't...

My last post regarding our cochlear implant surgery was titled The surgery that almost wasn't

So it's appropriate that I write this follow up. Long story short...we came home without a surgery.

To recap the day: After a sleepless night, we creatively entertained Afua in the morning to keep her from asking for food. Once we got to the hospital, she kept signing "eat" and "more" and I felt so bad.

She got her gown, all the pre-surgery check ups were done and then our OR nurse told us we would be 90 minutes late to start her surgery.

Afua pacing the hallways with her hospital pj's

The previous surgery was taking much longer than expected. I told the nurse that we felt bad for the family who is experiencing complications (this was us during Afua's last ENT surgery) and we would walk the hallways and wait. 

As I walked for the next hour, I felt a whisper: "for I know the plans I have for you,” 

Afua was peaceful when we expected her to be screaming from hunger. Eric and I grabbed coffee and sat in the lobby for a while.

In the lobby, contently holding Daddy's hand

We returned to the surgery waiting area. It would be 30 min more waiting, the nurse explained. This time Eric stayed and waited upstairs to rest his knee and I continued to walk the hallways. 

Another whisper: They are plans for good and not for disaster, to give you a future and a hope".

I knew to keep walking this journey and not worry about the outcome. I don't get these whispers too often, but when I do, I pay attention.

Another stop at the desk and this time the OR nurse came out. She said it would be at least 2 more hours. I questioned her if our surgeon would be fit to perform another 4 1/2 hours of surgery with Afua and I felt a bit of hesitation as she said that he would do it after resting and getting a bite to eat.

Eric and I had strong, but opposing opinions on if we should continue. We decided to take a walk and discuss it in private. As we walked, nothing was said to validate one opinion more than another, but we both arrived at the same decision. 

Just as I had felt the whispers throughout the morning, we knew this surgery was part of a bigger plan in Afua's life. To give her a hope and a future. But today was not the day that we would begin this journey. And this surgeon would not be the one to do it. We hated (strong word but true) walking away but we both knew it was 100% what we needed to do.

We informed the nurses that we would feed Afua and then go home. She offered to reschedule the surgery and we informed her that we would not be rescheduling. Too many things had happened with this surgeon's office that either caused us more worry (insurance issues to the last minute, rescheduling appointments and surgeries) or just didn't feel right in general. We also know that our area has many skilled surgeons and fresh start felt right. I know they felt badly for all that had happened and it felt a bit uncomfortable from that aspect too. We never asked to be treated differently and I felt there was a guilt over everyone to try to make us happy. Not my style, at all.

The saddest part to me came as we were gathering our things. One of the nurses said "you guys are the nicest people I have ever met. Most parents yell at us if their surgery is delayed even just a little". How could I not have compassion when another child is in the OR and having complications? There is a new plan for Afua and I believe the outcome will be even better.

For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. (Jeremiah 29:11-12 NLT)


Tuesday, August 12, 2014

Adoption and the church

Today, I am guest posting on The Grafted and sharing about how our church is caring for adoptive children and families. We were not an adoptive family when we joined our church and it was not our focus to find a so called "adoption friendly church" either. But it was great to reflect on our experiences and how our church family has embraced us all as we have grown.

We joined our current church as a family of 4 with 2 biological children. Four years later we are a family of 7 after adopting siblings (ages 6 ½ and 3 ½) in 2012 and our youngest daughter in 2013 at age 3. As I think about our life and how it’s changed, I can’t help but recognize how our church family has been a source of strength and support at all times.
The most important aspect of our adoption-friendly church is that all families are welcomed. The culture of adoption is evident when it is not seen as a plan B or a second choice but a way to grow one’s family as well as provide a family for a child who doesn’t have one. We see many adoptive families as we worship each Sunday so we are not viewed as something unique or different.  We have church staff members who have adopted and I think that is why there is an understanding that families need support before, during and after adoption. CONTINUE READING HERE...

Monday, August 11, 2014

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!

Tuesday, August 5, 2014

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 ;)