Adoption & Epilepsy

Ask any adoptive parent about their home study and they will tell you about the invasive questions they were asked.  Most of us have stories of the awkwardness of a complete stranger sitting calmly in our living rooms while demanding information that would make even the most open person blush.  It is the adoption equivalent of prenatal care.  Birth mothers have to put their feet up in the stirrups for the OB/GYN but we have to open our nightstand drawers for a social worker. 

Looking back, the part of my home study that stands out the most is not the section with the intimate questions, it was the discussion about the children we would someday take into our home.  I vividly remember the social worker asking us if we were interested in taking in children with special needs.  My husband and I had spoken at length on the topic ahead of time and told her that we were willing to take on learning disabilities or minor challenges.  I remember saying that I admired the families that fostered and adopted kids with special needs but that just wasn’t us.  I said it wouldn’t fit our lifestyle. It all feels pretty ironic now.

When I was pregnant with my son, I prayed that he would be healthy and did everything I could to give him the best shot at a good start.  I stayed pretty healthy, went to my appointments, decorated a nursery and ate animal cookies every time my developing baby demanded them. Still, I knew that there was always a chance that something would happen and we could face challenges.  Even when you do everything you can to improve the odds, childbirth really is something of a crapshoot. Adoption is different though.  A professional comes to your home and writes out exactly what you are looking for in a child. She asks you about race and age and gender.  You get a choice about disabilities, except when you don’t.

Finding out that your child has a disability can be devastating for any parent.  We often go through the stages of grief much like you would after a death but we can cycle back through them with each new limitation, emergency or worsening prognosis.  We have to learn to live in Holland and give up on dreams that we cherished since we ourselves were children.  Often all of this is done while in crisis so we do not have the time to sit down and fall apart because we are fighting desperately for our children’s lives and futures. There will come a time when we adjust to this new life but the initiation is brutal and leaves wounds that never really heal. 

Looking back I think that our adoption experience complicated how I processed Alyssa’s diagnosis.  No parent wants their child to have disabilities but we had specifically requested a kid that was “normal.”  When I got the call about Alyssa, her case worker explicitly stated that she did not have epilepsy.  We had these grand life plans that didn’t involve constant trips to doctors and therapies or always having to live near modern medical facilities.  We did something good by choosing to foster and adopt so it didn’t seem fair that the child we received was not the one we asked for. I was angry about the unfairness of it all for a very long time.

I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems.  I relate to adoptive parents too but our story isn’t just about adoption anymore.  I switch back and forth between groups depending on the support I need at the moment.  It is hard to find your tribe when you really fit somewhere in the middle and it is easy to feel alone when there isn’t a group with your name on it.

I don’t say all of this to make anyone feel sorry for us.  I am not asking for pity or pats on the back or patronizing comments about how God only gives special kids to special people.  I have realized over the past few weeks that there are many other families that find themselves in our position and I think maybe they struggle like I have.  I’m writing this tonight for the people who aren’t quite sure what group they belong to.  I’m writing to the mother who is raging at God for rewarding her good deeds with the chance to watch her child die.  I’m writing this for the people that lay awake at night wondering what they did to deserve this horror.  I’m writing this for the person who feels guilty because they are so angry and overwhelmed when that gets mixed up with the fear and grief.  I’m writing this to the parent that feels alone because I want you to know that I’m here too.  

We said exactly what we could handle and life didn’t listen.  We had great plans for the families we were building but those changed when the special needs surfaced. It is confusing and hard and not at all fair.  I can tell you though that it will eventually get better.  I know you didn’t ask for these trials but I also believe that you can make it through.  Give yourself some grace, accept the messiness and just keep breathing. 

The Problem with Re-homing

A few months ago, Rep. Justin Harris from Arkansas and his wife made national news when it was revealed that they had re-homed their two adopted daughters.  For those who haven’t been following the story, Harris allegedly abused his political power to push through an adoption that almost every professional involved believed was a bad fit.  After the adoption, the girls’ behavior grew worse.  A former babysitter even claims the Harrises believed their daughters were demon possessed and called in exorcists from out of state to fix the children.  Eventually, the couple realized that they were unable to handle the complex psychological problems that the girls’ had so they gave them to another couple where at least one of them was sexually abused.  The girls have now been adopted again and are reportedly doing well.

The Harris adoption fiasco has bothered me since the news first broke.  I am appalled that this man thinks himself too good to go through the proper channels and adopt children that are a healthy match for his family.  This couple might have been fine adoptive parents to the right kids.  Instead they met a birthmother in a parking lot, claimed religious discrimination when CPS told them that prayer was not enough to help these girls, then allegedly held up the budget of the entire agency until the placement was approved. What they failed to understand is that waiting children do not only need to be adopted; they need to be adopted by families who are appropriate for them and who are trained to deal with complex trauma.  Kids who have been severely abused or neglected cannot be parented like typical children and they deserve parents who have put in the time and effort to prepare for that.

The Harrises claim that they reached out for help after the adoption and were not able to access the services their daughters needed.  One of the girls had been diagnosed with reactive attachment disorder, or RAD, and her behaviors were terrifying the family. Children with RAD have typically experienced so much abuse or neglect that they are unable to form healthy attachments.  They can be extremely violent even at very young ages.  Often they become homicidal or suicidal and everyone in the home is at risk of severe harm.  Stories abound of children with RAD killing pets, sexually abusing siblings, burning down homes with people inside, or attempting suicide.  Unfortunately, the intense treatments that these kids need are few and far between and when a parent is able to find a place that specializes in these kinds of issues, Medicaid* often refuses to cover the cost.  Instead, children with RAD are bounced between inadequate providers or sent home where they are a danger to their family and themselves.

Like many parents who are struggling with a child who has RAD, the Harrises claim that they reached out to CPS because they did not know what else to do with their children.  They say that they were told that if they relinquished their parental rights to their children, they would be charged with child abandonment.  The problem is that they were not given any other options.  While my personal opinion of the Harrises is less generous, I truly believe that the majority of adoptive parents who consider rehoming are not bad people who simply grew tired of the children they adopted.  Many of them are good people who wanted to help kids and build their families but instead find themselves in desperate situations with nowhere to turn.

I wrote recently about my own experience with a therapist who assumed that I should “just re-adopt out” my daughter because things were difficult.  It was insulting because the suggestion meant that he did not see my family as one worth preserving.  I didn’t go in as someone who was scared for her life or that of her other children.  I went to him as a grieving mother who was trying to make sense of a devastating diagnosis.  He made a recommendation that he would never have made to a biological parent simply because he placed a lower value on the relationship I have with my adopted daughter than the one I have with my biological son.  That attitude is unacceptable but it is sadly prevalent among the people that adoptive parents reach out to for support.  For example, when I interned at an inpatient psychiatric hospital, I saw countless children and adolescents with very severe mental problems who were moved to long-term residential treatment centers.  The only time it was ever suggested that a child be placed with a new family instead of receiving treatment was when someone noticed the adoption box was checked in their chart. 

The problem with rehoming, as it currently exists, is that it fails both the children and the adoptive parents.  Every time a child is placed with a new family, they suffer a new loss and it becomes harder for them to trust that they will ever be truly loved by anyone.  In addition, many of the kids who find themselves in new homes are later abused or abandoned again.  With no government or agency oversight to make sure that the new homes are safe for these children, the outcomes can be devastating.

That the problem of rehoming exist in the magnitude it does is evidence that there is a problem with the child welfare system.  When parents go through classes to foster-adopt, we are promised help after the adoption.  We are told that we can take in kids from hard places because we will have access to all of the resources we need to parent them.  We are assured that if we do what we are trained to do, the children will get better.  Unfortunately those are often empty promises.  

The problem with rehoming is that it allows CPS, adoption agencies, and the professionals that we depend on to simply push our children aside and blame the parents when there is fallout.  The problem is that there is not an acceptable alternative for situations where the child cannot safely remain with their family.  The problem is that there are deeply wounded children who have been failed many times by the people who were supposed to protect them and there is not an easy way to fix that.  I don’t think that there are simple solutions to this problem but I do think we have to start a conversation about real alternatives.  We have to put down our torches so that we can see the hurting people who feel like they have no other options.  It’s not enough to be angry about little girls being tossed between homes and given to a rapist, we have to work to keep it from happening again. 

I welcome your thoughts on how we can come together as a community to help adoptive families who are struggling.  Let’s continue this conversation on Facebook or in the comments below.

 

*In most cases, children who are adopted from foster care are able to keep Medicaid.  This helps people adopt who would not have been able to because of the high cost of medical care. 

Should Everyone Consider Adoption?

   Someone asked me recently if I thought that everyone who wants children should consider adoption. I am absolutely an advocate for adoption but I found myself pausing before I answered.  The problem is that sometimes when we promote adoption and highlight the happy families it can create, we gloss over the darker side.  The truth is that every tearjerker story about a family being brought together starts with another story of absolute devastation.  Our children are not simply gifted to us, they are taken or abandoned or orphaned first.  Sometimes the love of a new family helps to heal the wounds of that loss; sometimes it isn’t enough. 

   When we recognize that adoption is so deeply connected to loss, it changes the conversation.  It is no longer simply about adults who want to be parents and fulfil that dream through adoption.  We also begin to recognize that adoption is about children who have lost everything.  Studies show that even infants who are adopted at birth, grieve their first mother.  Children who spend time in orphanages, foster placements or abusive homes lose their self of normalcy, the people that they depended on, and often their identity.  They grow up in a world focused on survival instead of play and connection.  Fortunately, in the majority of cases, those children can go on to live happy and loving lives when given the right supports but some struggle to ever really recover. 

   When someone is considering adoption, it should be with the knowledge that it is more complicated than parenting a typical, biological child. You should know that sometimes the wounds are deep and do not heal easily.  To make things worse, sometimes the supports that you were promised for after the adoption never materialize.  You should know that your child’s past is not sealed at adoption like their original birth certificate.  Everything that their old life gave them or made them remains after the judge declares you a forever family.  At the same time, you should know that you will grow to love this child deeper than you ever thought possible.  You should know that when you get through to them you will feel as though you have just won the Olympics.  You should know that there will be moments that you find yourself in awe that God is allowing you to parent this amazing person. 

   Although the dark side of adoption is not highlighted on commercials, I think it is critical to understand before you consider adding to your family.  You must take the time to have some honest conversations about whether your family can handle adoption and, if so, what type is best for you.  There are important differences between international, domestic, and foster care adoption. You should also decide what child(ren) would fit best with you.  The waiting list for healthy infants is long but there are thousands of older children, sibling groups or children with a wide range of disabilities who are legally free and waiting for a family today.  If your heart is open to these amazing kids, please consider opening your home too but if they are a consolation prize for the baby that you really wanted, please step back in line for the one that you will give your whole heart to.

   So, should everyone consider adoption? My answer is no.  I do think that everyone should consider how they can help the orphan. That could mean anything from donating duffle bags for kids being shuffled between homes to mentoring youth or providing respite care.  Or, maybe you will find your niche in some of the many great programs working to reduce the need for adoption around the globe.  It could also lead to a realization that the children you were destined to raise had another family first.  We all have a different roles to play and I think that we should each consider where we fit best.  Adoption can be beautiful but it is not simple or easy or for everyone.  Is it for you? What are you considering for your family?

I know that my thoughts on this are out of line with the typical Adoption Awareness Month message.  I want to hear your thoughts.  Let’s continue this conversation on Facebook.

To the New Epilepsy Mom:

I recognize that look in your eyes.  It’s a mix of terror, despair, confusion and maybe a little bit of hope that this is all just a bad dream.  Maybe you are still in the hospital waiting helplessly while the doctors try to stop the seizures.  Maybe you are feeling broken having just received your child’s diagnosis.  Maybe you are ready to curl into a ball and hide because it all feels so overwhelming.  I’ve been there.  I’m still there sometimes.

When my daughter started seizing, the world turned upside down.  When we finally received her diagnosis of PCDH-19 Epilepsy, I broke.  I felt alone and scared and confused.  I didn’t know what to do or who to turn to.  At this point, we seem to have settled into our new normal so I’m sharing a few of the things I wish someone had been there to tell me.

1.       You are not alone.

I know you feel alone.  I know that it seems like no one understands.  Many of us who have been on this road for a while understand the terror and we are ready to walk beside you.  You can find us through your hospital’s social workers, online groups or Parent to Parent.  We want to be there for you.  I found a group of parents on Facebook who have children with my daughter’s disorder and they have been the ones to pull me through some of the darkest moments.

2.       Build your team. 

The old adage about needing a village to raise a child will become especially true.  There will be doctors, nurses, therapists, and social workers. (You’ll notice that I wrote every one of those in the plural.  That was on purpose.)  The relationship with your child’s teachers or babysitters will grow to a whole new level.  Take the time to talk with your team until you have your questions answered.  Research the professionals you are going to work with because having a great therapists / doctor / whatever you need can make a world of difference if your child’s progress.   

3.       Ignore the idiots.  

People will tell you that they know what it’s like because their dog had a seizure.  People will tell you that garlic or lemons or copper bracelets cured epilepsy for their father’s cousin’s friend’s co-worker.  In my experience it is better to roll your eyes than punch them in the nose. 

You can also expect people to think that your crisis is over if they see you at WalMart and your child is not currently having a seizure.  Realize that most people just don’t know the facts about epilepsy.  You can educate them if you choose but don’t feel guilty if you need to simply walk away.  It can also help to ask a friend to keep people informed so that the burden doesn’t fall entirely on your shoulders.   

4.       Be who you are. 

It’s easy to look at those “super moms” who seem to have it all together.  They balance all of their child’s special needs with their hair in place and advocate tirelessly without messing up their makeup.  I am not one of those moms.  My hair is never in place, my mascara is usually smudged and I am not always the most diplomatic person.  I used to alternate between feeling guilty for not being them and being angry at them for making me feel guilty.  Now, I’ve realized that most of them aren’t quite as perfect as I thought.

I also learned that many people cope with their child’s epilepsy by advocating.  If that’s you, perfect.  Write letters.  Demand action.  Go on fund raising walks.  All of those are great things to pour your energy / anxiety into.  If raising awareness or funding research helps you cope, then go for it.  If you are the mom that focuses solely on your own child and getting her or him the best care possible, that’s ok too.  If you don’t want to share your story, you don’t have to.   Work on finding a way to battle epilepsy that fits for you and your family.  The last thing you need to do right now is try to fit into someone else’s model of what a “good” epilepsy mom looks like.  You have enough on your plate already.

5.       Understand that your friends may change.

Sometimes the people who you thought would be there through thick and thin disappear because seizures are scary.  Sometimes people step up in ways you never imagined.  Your life has changed now and because of that so will many of your friendships.  Mourn the ones you lose but don’t spend too much time being bitter.  You have bigger battles to fight than that.

6.       Keep going.

Treating epilepsy is complicated.  Your child may need to be seen by multiple specialist and they may not be able to get the seizures under control immediately.  Don’t give up hope when the first medications don’t work or the second or third.  About 70% of people with epilepsy are able to control the seizures with medications but it often takes time to find the right drug or combination of treatments.  It can also take time for the doctors to diagnose the exact cause of your child’s epilepsy which can greatly impact the prognosis and course of treatment.  Many people never get an explanation but with time are able to find treatments that help. 

7.       Trust Your Gut

Researchers have made incredible advances in the treatment and diagnosis of epilepsy but this is not an exact science. You may be asked to weigh terrifying side effects of harsh medications against the unknown costs of waiting or non-medication interventions like surgery or ketogenic diets.  Do your research and ask questions until they are answered.  When you are not in crisis, take the time to figure out what treatment(s) makes the most sense for your child and family and feel right for you.

Also understand that epilepsy is more than seizures.  It can impact motor, speech, cognition and behavior.  If you think that your child is acting different, don’t be afraid to tell the doctors.  If you think something might be related, speak up.  Through it all, trust your intuition.  When something feels off, pay attention.  You know your child better than anyone else.  That is a knowledge set that the best specialist on the planet doesn’t have.  Never doubt its value. 

8.       Cry.

Or scream or laugh or punch a wall.  Epilepsy sucks.  This monster just invaded your family and is attacking your child. Fall apart for a little while.  The world won’t end if you do.  If it hasn’t happened yet, know that the day is coming when you break down sobbing at a completely inappropriate time or your reaction to a small annoyance is entirely out of proportion.  Finding a way to let some steam off along the way might prevent you from dissolving into a puddle of tears when the gas station clerk asks how you are doing.      

9.       Breathe. 

Whatever you need to do to be ok, do it.  It may feel selfish to leave your child right now just so that you can get a manicure.  It’s not.  Your child needs you to take a break so that you can come back refreshed enough to be the advocate they need right now.  Parenting a child with special needs is absolutely exhausting.   

10.   Know that you will change.

You will never again be the parent, or the person, that you were before your child started seizing.  Every jerky movement will trigger something terrifying in your brain that other parents simply cannot understand.  Small joys like bubble baths will suddenly look like watery graves.  There will be good changes too though.  You will find that you can fight harder than you ever thought you could. You will figure out what in life really matters. 

I know you didn’t want this.  I know that you’re scared.  Believe me when I tell you that the sun will come back out at some point.  So, give yourself some grace, reach out to the mamas who have gone before you, hug your baby and just keep swimming. 

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