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