Thursday, September 18, 2014

2 Years: Reflections and Lessons Learned from a Parent of a Child with Multiple Special Needs

Reflection can be a good thing. But getting lost in one's thoughts of lost dreams and misplaced expectations can leave one with tears gently falling. As I process lessons we have learned over the last two years, our reality no longer resembles our original vision.

Two years ago today, Luke had simultaneous bilateral cochlear implant surgery and our journey began.

Looking back, we were so naive and hopeful. Luke had been home via international adoption a mere 4 months. Luke was now loved unconditionally in our forever family and he had so many opportunities and resources available to help him reach his potential. He was 28 months old when surgery took place. Eye contact was very poor and he didn't seem interested in sign language. After Luke's hearing activation, we began intensive audio-verbal therapy. After a year of slow progress and Luke's eye contact was much improved, we reintroduced functional sign language and Luke's communication began to expand. In the last year, Luke has also been diagnosed with Usher Syndrome (deaf-blindness where vision loss usually begins around age 12), Autism Spectrum Disorder, and Sensory Processing Disorder.

Through the school of hard knocks, we learned some lessons from parenting having a child with cochlear implants and additional special needs. These lessons are applicable to any parent of an adopted child or child with any special need.

1. It's harder than the professionals tell you. Vast amounts of time are necessary for therapy and more intentional attention is needed at home for success. At the time of surgery, parents wear rose colored glasses. We only foresee positive outcomes. None of the professionals discuss the blood, sweat, and tears that have to go into it.

2. It can cause financial stress. Therapy is expensive. As are all the medical appointments and equipment costs. In our state, we don't qualify for Medicaid. Luke is on a Medicaid Waiver Waiting List that is 8-9 years long. This has put significant financial strain on our family.

3. Success doesn't look the same to everybody. Often times, cochlear implant surgery is the first step to finding out what else may be going on with one's child. Once Luke's hearing was "corrected", we were able to tease out what was not related to hearing loss. We were then able look objectively and accurately at the other issues at hand.

4. Celebrate successes no matter how small. Progress sometimes comes in many forms.

5. This is a long-term commitment. Stay focused and consistent.

6. Surround yourself with support. Our team of providers and therapists have been a lifeline and Godsend to our family. These people work tirelessly with our son and they also help support us in the journey. Connect with other families whose situations are similar.

7. Remember that the story isn't over yet. The ending isn't written. What we envisioned for our child may not come to be. It may look different. God sees the big picture, but we cannot. We must remain faithful knowing that God never leaves us and His will is perfect.

8. Sometimes you just have to let go. I have come to realize I cannot do it all and that is okay. Focus on what is important: God, Family, Friends/Community.

9. Take time for yourself. I am a better mother if I am refreshed and not frazzled. Whether it be a coffee date with a friend, or a weekend away at the beach, make sure you schedule times of respite.

10. Never stop learning. There are vast resources and support organizations available. Do not be afraid to seek out the help you need.

11. Say goodbye to the naysayers. Life is stressful enough. Just let those relationships go if they are negatively holding you back.

12. Give back to others. People have ministered to you. Do your part and pay it forward by helping others who may be just starting the journey. Lending a listening ear and showing genuine empathy blesses both the recipient and the giver.

13. Never give up. Always press on. You are the best advocate for your child. They need you. Even on the hard days remember this child is worth it.

Hope for today and strength for tomorrow,

Jo Anna

Friday, May 2, 2014

2 years already! Gotcha Day and an Unexpected Journey

Two years ago today we met our beautful sons.

We were so excited and the future was wide before us. We were new adoptive parents, new to navigating special needs and boys! The last two years have been full of joy, learning, advocacy, and also lots of tears and frustrations. Oh, how the Lord has grown each one of us, molded us, refined us and He is still doing so today in ways we would have never known had we not said yes to these two precious treasures.

The Bible tells us children a gift from God. And they are--each and every one.

1 Samuel 1:26-26 says "[Hannah to the Priest Eli] As surely as you live, my lord, I am the woman who stood here beside you praying to the LORD. I prayed for this child, and the LORD has granted me what I asked of him. So now I give him to the LORD. For his whole life he will be given over to the LORD." (NIV)

Specifically over the last year, we have seen Jansen make remarkable progress in all areas, especially academics and speech. He loves to help others, is always quick to give verbal praise, and is happiest when outside playing with friends or family.

In addition to Luke's special needs of profound bilateral hearing loss and global development delay, over the last year, he has also been diagnosed with Usher Syndrome (deaf-blindness) and Autism Spectrum Disorder. This boy's giggles are contagious. He overflows with joy. His eye contact has improved dramatically, as well as his listening skills thanks to countless audio verbal therapy sessions and cochlear implant technology. He is now really catching on to sign language and has more than 10 signs he uses regularly. We are excited to see what God has in store for this precious puzzle who has stolen our hearts!

I will leave you with the following story that portrays our family's adventure, as well as many others.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Monday, January 6, 2014

Happy 4th Birthday Luke and Mom's two wishes

Luke loves technology. This picture accurately portrays our little man. Playing on the IPad makes his day.

Luke continues to grow and make strides developmentally in all areas. His eye contact, appropriate displays of affection, and listening skills are his 3 greatest areas of improvement. Luke has a long road ahead of him, but we are thankful for his accomplishments this far. We have a great network of providers who truly have Luke's best interests at heart.

Two attainable goals I would love to see Luke accomplish this year are:
1. Begin speaking some basic words
2. Successful potty training

Mark 10:27
Jesus looked at them and said, “With man this is impossible, but not with God; all things are possible with God.”

Happy 4th birthday to the little boy who holds the key to my heart more fiercely than I could ever imagine, who drives me crazy at times, and who has brought me to my knees in prayer more than anyone or anything else in my life. I can't imagine what life would be without you.