SPECIAL NEEDS ADOPTION: ANSWERING SOME QUESTIONS

In this post Teresa Grimes will pose some questions for those considering adopting a special needs child. Her responses that come from experience, both personally and professionally, are both helpful and wise. We encourage you to share this with anyone you know whose hearts are open to receive a special needs child.

Just one more week until HOPE AT HOME 2011! We are really looking forward to seeing you! For more information and to register, click HERE.

As an adoption advocate and caseworker, I am often asked how we personally made the decision to adopt "special needs". This is something that is becoming more common in both international and domestic adoption. I've found that there are some very specific questions one should ask before embarking on this journey.

1.) Are you comfortable talking with doctors and other healthcare professionals? As a parent, you are your child's best advocate. Don't be afraid to ask specific, probing questions of your medical team. It is your choice and responsibility to assemble a team of medical professionals that you feel comfortable with and whom you trust to care for your child. Ask as many questions as you need to get the answers that you require.

2.) Are you flexible and willing to adjust your schedule around your child's special needs? Special needs children will most likely have frequent doctor's visits and scheduled treatments. Sometimes these appointments can be scheduled far in advance and sometimes they are more urgent in nature. How do you handle and respond to the unexpected when it comes to scheduling? Does your lifestyle have room for routine treatments that may be necessary several times per week or per month?

3.) Are you prepared to make difficult decisions that may affect your child's health? One of the things you will face as the parent of a special needs child is that your medical team will provide you with information, but you will be responsible for processing that information and making decisions that affect your child. Many decisions will fall on your shoulders. This is particularly true in situations where treatments may be considered new or experimental.

4.) Can you accept a special need condition that is "medically manageable" rather than "curable"?

5.) Are you committed to connecting with the leading experts on your child's condition, regardless of where they are geographically located?

6.) Are you willing to be an advocate to obtain medical, mental health and school services needed for your child's special needs?

7.) Do you have adquate medical insurance to cover your child's needs? What are the lifetime and annual maximums on your health insurance policy? Are you willing to battle your insurance company on a continual basis to have them cover the things your plan states are covered. You will find that just because yoru insurance plan says the will cover certain procedures and treatments, this does not always mean that claims will be paid on a timely basis or that extensive pre-approvals and pre-authorizations will not be required. You will have to learn to document everything.

8.) If married, will you work as a team and are you both equally committed to special needs parenting? There is an extremely high divorce rate among parents of special needs children. Can both of you accept and love a child who is not considered "normal" by society's standards? How will you respond to the added strain on your family's time and finances. How will you find time for "couple time" and balance the needs of your growing family?

Special needs adoption requires a family to provide their child with permanence and commitment and a secure environment in which to truly experience “family.” Our goal as parents must be to model the Father’s love for us and to reflect His desire to adopt each of us into the family of God.  These are some particular scripture verses that have provided me with strength and comfort.

“Be joyful always” (1 Thessalonians 5:16) –Celebrate victories both big and small.  Keep a sense of humor.  Maintain a spirit of joy and thankfulness.

“For in him all things were created: things in heaven and on earth, visible and invisible, whether thrones or powers or rulers or authorities; all things have been created through him and for him.” (Colossians 1:16) – It helps to remember that God has a plan for every thing and everyone He creates and that we are all made in His image. 

“Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.” (James 5:16) – Pray continuously for your child, your child’s doctors and caregivers, and for wisdom and direction for yourself as a parent. 

You will meet Teresa and her husband Randy at HOPE AT HOME 2011 Conference for adoptive, foster, and waiting parents. Join us September 23-24!

SPECIAL NEEDS ADOPTION

Hope at Home is excited to introduce you to the Grimes Family. You may have read their daughter Erica's post and already know something about this wonderful family. Randy and Teresa, parents of six children, four of whom joined their family through adoption, pastor Family by Faith Worship Center north of Atlanta. In this post Teresa shares the story of one of their adoptions and some of the unique realities their son's special needs have introduced into their lives. 


You will meet Teresa and Randy at HOPE AT HOME 2011, September 23-24. They will be speaking more about adoption and parenting the special needs child. Find out more and register HERE.

I knew he was "Our Son."

I knew in my heart he was OUR SON             

In 2007, with four children already in our family and a firm prompting from the Lord to adopt again, I began contacting adoption agencies regarding both domestic and international adoption.  I had done a little research on adopting from Taiwan, but the adoption programs I found did not appear to be a good fit for us.  One morning I awoke with a distinct impression to “revisit Taiwan”.  I went to my computer and instead of “adoption” this time I entered “Taiwan orphanage”.  The search brought up a specific orphanage in Taiwan and a list of their waiting children, all of whom had some form of special needs.  I looked at the pictures and one baby boy immediately captured my attention.  I knew in my heart that he was “our son”.  When my husband came home for dinner that night  I had this baby’s photo sitting on his dinner plate.  My husband said, “What’s this?”  I said, “That’s our new son, and by the way, what is Fabry disease?”  In that moment, our family entered the world of special needs adoption.

Fabry Disease is life 

altering and life threatening

Our son, Jeremiah, was born in Taiwan in August of 2006, four months after the country began a pilot newborn screening program for Fabry disease, an extremely rare genetic disorder.  We just found out this summer that of 110,000 newborns tested in Taiwan, only 45 babies had tested positive for Fabry.  In medical terms, Fabry disease is a lysosomal storage disorder.  In layman’s terms it is like dealing with cholesterol on steroids.  We have all heard of cholesterol and most of us know that cholesterol is a lipid.  The stickiest lipid we have in our blood is a substance known as GL3.  Normally, we have a naturally occurring enzyme in our blood that breaks down GL3 and keeps it from accumulating in our bloodstream and organs.  Those with Fabry disease are missing this enzyme, and therefore GL3 begins to accumulate in the brain, kidneys, heart, lungs, and other organs.  Fabry disease affects essentially every system and organ of the body in ways that researchers are still trying to understand.  Fabry Disease is a life-altering and eventually life-threatening disease.  It is not uncommon for men to die from complications of Fabry as early as the 30s or 40s.  

Yes, we could....

Randy and I immediately began researching Fabry disease as soon as we became aware of Jeremiah waiting in Taiwan.  As we made contacts with those in the Fabry community, we quickly realized that a Center of Excellence for the treatment of this disease was located about 40 miles from our house at the Genetics Department of Emory University.  We made an appointment for a consultation before submitting our final adoption paperwork to Taiwan.  Our first question to the staff was, “We know we can’t cure this, but can we medically manage it?”  We were assured that, yes, we could.  With that word, the decision was final that Jeremiah was meant to be ours.

We have to step out in faith

Since Jeremiah’s arrival home in January 2008 we have taken a very aggressive approach to his treatment.  Our goal is to increase the quality and longevity of Jeremiah’s life.  The treatment for Fabry disease involves intravenous administration of a drug that acts as an artificial enzyme.  This is commonly referred to as enzyme replacement therapy or ERT.   In February of 2009, we had a portacath inserted into Jeremiah’s chest.  Just a few weeks later, Jeremiah had his first infusion of Fabrazyme®, the only drug available in the United States for treatment of Fabry disease.  With this dose, Jeremiah became the youngest known child in the world to be treated with Fabrazyme® and to begin regularly scheduled enzyme replacement therapy for Fabry.  With each decision regarding Jeremiah’s care we have had to step out in faith that we are doing more good than harm.  There is very little information and research on the effects of ERT on a child so young.  We feel like a guinea pig in many ways, but we know the impact of not treating Fabry until after damage has occurred to a patient’s major organs and are determined to take advantage of every medical option that is available to Jeremiah. 

Noah hugs his new brother.

An unexpected bump

We hit an unexpected bump in the road in Jeremiah’s care when major manufacturing issues disrupted the supply of the drug needed for his treatments.   The manufacturing problems resulted in a worldwide shortage of the drug meaning that Jeremiah’s treatments became sporadic and the dosing became inconsistent.  While he was supposed to receive an infusion every two weeks, we once had to go as long as two months between treatments.  Sometimes we would get a full dose, other times a half-dose and occasionally even a one-third dose.  We began to see the impact on Jeremiah’s health, particularly in terms of his fatigue and stamina.  It was frustrating for us because part of the point of starting Jeremiah’s treatments so early was for the medical community to be able to measure the impact of early treatment and intervention on the progression of the disease.

In early 2011 we got some wonderful news.  Jeremiah’s doctors received permission from the Food and Drug Administration to provide him with a new medicine under an emergency access protocol.  The new medicine has been used in Europe but does not have FDA approval for use here in the United States.  At the time Jeremiah began his infusions he was only the 38^th child in the world under the age of 18 to be treated with this drug.  As I was signing the releases and authorizations for Jeremiah to be treated with this medicine, it was intimidating and a little scary to think that every child in the world who has received this medicine could fit in one U.S. classroom.  The “chain of custody” controls that are in place each time Jeremiah receives a treatment are about the equivalent of transferring gold out of Fort Knox.

It's just what we do

We are so encouraged by how Jeremiah has responded to the new medicine.  Most days, he has the stamina and energy of a normal four year old boy.  Because of this we are hopeful that he will be able to attend regular school.  Our biggest concern recently has been monitoring his exposure to the Georgia summer heat, as Fabry patients have a very low tolerance for hot weather.  Most Fabry patients will lose their ability to sweat, making them very susceptible to heat exhaustion and heat stroke.  We drive the 40 or so miles to Emory University for treatments every other Tuesday and we are happy to do it.  Traveling that distance can take up to two hours in Atlanta traffic, but we feel blessed that such an excellent, experienced medical facility is nearby.  Jeremiah’s treatment schedule is an adjustment to our family routine and requires a commitment on our part, but we don’t in any way see it as a burden.  It’s just what we do.  Jeremiah is an “old pro” at this point when it comes to actually getting his infusions.  He has been flushing his own port since he was two years old.  He is very attached to his infusion nurse, Trudi, whose consistent care has given Jeremiah a feeling of trust and security.  We consume the latest information regarding Fabry from various medical journals and attend as many patient education programs as we can.  I enjoy picking the brains of other, older Fabry patients who have several years experience fighting this disease.  The insights they share into their own childhood experiences with Fabry have been invaluable to me as a parent.

We've extended the discount registration fee through September 16. Register now for HOPE AT HOME 2011!