Special Needs Spotlight || Alexis

Hey you guys!  Miggy here.  I’m really excited to be featuring today’s spotlight talking about the amazing and brave girl Alexis who has reactive attachment disorder or RAD, among other invisible disorders. I first heard about this disorder on an episode of This American Life and wow…the complexity and depth of this disorder will, as Ira Glass puts it, make your job as a parent look easy. If you have time to listen to the podcast I highly recommend it as it will give you another great framework for understanding this disorder should you ever meet a family dealing with it. Check it out here. Education and awareness…that’s what we’re all about here. Enjoy the spotlight! 

Miggy: Shala and Alexis I’m so excited to have you both here today, as a mother and daughter, discussing adoption and hidden issues like ADHD, sensory processing, ODD and most specifically RAD, known as reactive attachment disorder. I first heard about RAD on an episode of This American Life and later through a co-worker who ended up also dealing with this rare, difficult and really misunderstood disorder. First, will you take us back to how your adopted children first came into your lives? How long did you know each other before choosing to adopt and what preparation did you have for the disorders and issues you would be facing?

Shala: My husband and I started the journey to adopt the spring of 2006. This is when we started reading a lot of adoption issue, attachment focused, special needs books. We were open with our community of our desire of adoption as we pursued international adoption at first. Due to this openness our childhood friend’s mom who was a foster mom in our community came to us with the proposal of doing respite for twins she had in her care. By this time in our journey (spring of 2008) we had become pregnant with our now first born son so we agreed to do respite only during our pregnancy. It was during this time the twins’ birth-mother’s parental rights were removed and they became eligible for adoption but it was clear to us that we were not to pursue them at this time. After having our son in December of 2008 we stopped respite and would not see the twins again until the spring of 2010. We were then asked to do respite again it was at this time we knew they were our children. We applied to adopt them, completed a home study and on Nov 26, 2010 our almost 10 year old twins joined our family forever. We were aware of all the challenges Alexis’ hidden special needs presented, but knowing and living them out are two very different things.

Miggy: First, can you please educate us on RAD–What is it? Like most conditions I know there is a broad spectrum–will you please tell us about the breadth of this spectrum (what does it look like when it’s mild and what does it look like in its extreme?) and where does your daughter fall on this spectrum? How does RAD affect your daughter and family’s day-to-day?  From what I understand that while RAD is a rare disorder it often occurs in children who are adopted at an older age–is this true?

Shala: Reactive Attachment Disorder is a condition that affects how a person forms attachment, emotional connection and healthy relationships. It is caused by a lack of a consistent caretaker or the neglect of anyone at all in early childhood.  

The RAD spectrum can be classified in two main types, inhibited and disinhibited. Kids who are inhibited RAD are emotionally withdrawn and rarely respond to or even seek out comfort even with those whom they are closest to. Kids who are disinhibited RAD tend to be overly sociable, eliciting comfort and affection non-selectively, even from adults who are complete strangers yet not having any specific, selectively exclusive, close relationships including with those whom they are closest to. RAD often is a catalyst for disorders like ODD (oppositional defiant disorder), ADHD (Attention Deficit Hyperactivity Disorder), Food Insecurity and many more. Alexis personally deals with all of these and is on the extreme end of disinhibited RAD.

For our day-to-day it can affect us in a variety of ways most of which stem from trust, security, and deep rooted survival challenges. It affects our relationship with her, her relationships with others, her reaction to changes of any kind, her reaction to celebrations and her reaction to actions that have her feel love. When she feels loved, her internal voice is that love is scary and unknown so she needs to sabotage it or reject it. In the past we have seen this being acted out by extreme consistent lying, manipulation, rages, oppositional arguing, parentalization, tristrangulation, difficulties of healthy boundaries, food portions, fantasy vs. reality, self control and self worth. Most of these are not as severe as they once were but we sometimes see them come forth now and again.

It has also caused her to be socially behind (socially she is close to a 6 year old level but intellectually and physically 14 years old, her current birth age) which makes parenting, socializing with peers and even interests a unique challenge. Although the interesting part of being socially behind is that her father and I do not complain about as having a 14 year old daughter who would rather read kids books, watch My Little Pony and play with dolls rather than being all consumed with ‘being cool.’ This is a blessing.  🙂

As for your question about it being a condition most likely in older children who are adopted this is not true and a very common misunderstanding. I am glad you asked. As I stated above it comes from inconsistency of caregiver or neglect of care in early child development so it can be found in babies to teens and with the rise of kids having multiple changing teachers, coaches, and child care providers throughout their day and early life. RAD can also be found in children who are in birth-families, not only those who are adopted. Just because a child is adopted at an older age or has been through a few foster homes or orphanages they may not have RAD as this is due to having been well cared for by one permanent caregiver in those first 5 years of life.

Alexis and Shala left

Miggy: One thing that has stood out to me from both the This American Life piece and my co-workers wife’s blog, was that the treatment was rather extensive and from an outsider’s point of view could easily be misunderstood. Can you tell me what treatment has been like for your family? Did you find a RAD specialist? Are there many specialists?

Shala: You are completely right! Often I have been misunderstood and I know many RAD parents feel they have also. That is why many say having those people who just ‘get it’ is so important.

Sadly when it comes to treatment we have had many therapists who have been able to aid us to some degrees but none who are specialized in RAD. RAD is a fairly newly recognized diagnosed disorder and research is still very new. This makes finding a specialist that really understands very difficult.

We have, including therapy, pursued educating ourselves in techniques by several well known RAD specialist Doctors. We have applied many different practices and continue to use the ones that have been useful and have resulted in healing. Some of the doctors’ work we have used are Dr.Karen Purvis, Dr.Nancy Thomas, Dr.Bruce Perry, Dr.Deborah Gray, and Dr.Daniel Hughes.

Miggy: What are the biggest worries you face for your Alexis? What are your hopes and dreams for her?  

Shala: My biggest worry is her being alone. Pushing away everyone in her life. The perspective of the philosophy to “remove toxic people in your life” changes when you could see your child being that toxic person everyone should supposedly remove from their life. Truly, that thought is heartbreaking because beyond RAD Alexis is amazing and I think many people will loose out and remove her from their life because she is ‘‘toxic’. My other worry is her being used by others due to her lack of boundaries.  

My hopes for her are that she will have attachment in her life, she will feel empathy, and my deepest hope she would allow herself to deeply feel love. Of course my selfish desire would be for her to be able to be a responsible adult who could care for herself. My husband and I do know she will most likely be in our care for life, in our home, which we are actually fine with but hey a Mom can dream. ;P

 

Miggy: This question is specifically for your daughter–Can you describe what it’s like having RAD? Is there a way to help those of us who have no experience with a disorder like this to understand it a little better?    

Alexis: Having RAD is a horrible disorder to have because it makes it harder to trust and tell if someone will always love me. Being in a forever home is harder when you have RAD because it makes you question your family’s love even when you really deep down know that they love you. For me personally, having that disorder makes me believe that they actually don’t care about me sometimes–it’s the same way with my friends too. Having RAD also makes it really hard for me to understand my true feelings, whether they are mine or not, and it makes it hard to understand myself. I know that my family loves me, they remind me every day and they cared about me enough to go through the long and hard process of trying to adopt me–that’s one reason how I know they love me–but as said before sometimes I question them and their reasons for adopting me. My friends prove that they care by trying to be there for me and helping me out when times get tough or when I’m doing something they know isn’t the best thing for me and try to stop me. When they do stop me I may not show them my thanks. Same with my family when they show their love and I would like them to know how thankful I am to know that they care and love me because it has helped me realize that they do love me and what love actually is… but as I said I question. Sometimes I get really mad that I have RAD and I wonder a lot what my life would be like without RAD in my life, it would be way different. But I realize that even without RAD that my life would never be sunshine and rainbows the way I wish it was, which is fine because I realize that is not a realistic standard.

Miggy: How can people best approach or respond to your family and your unique circumstances? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Shala: I think it would first be helpful if people educated themselves. Ignorance is not bliss especially to the people you are ignorant of–whether that is taking the time to look into RAD (or any of the many hidden special needs) or asking if they could learn more straight from Mom. If you are going to get the info straight from the horse’s mouth I suggest asking mom which is the most helpful way to take up her time, as kids with attachment struggles make for dividing mom’s attention difficult. She may need you to come to her, or maybe she will need to only text but spread it throughout her day. Remember this is a big part of her struggle as a RAD mom.

Secondly, listen to the parent’s instructions even if they seem backwards or wrong to you. Chances are you breaking those instructions even slightly will destroy weeks of hard work and progress.

Last, but not least when you can see the parents and child in a ‘RAD moment’ try not stepping in, but standing by. Parents most likely have things in control even if it may not look like it to you. You jumping in can cause all sorts of problems including reinforcing the thought of the child that the parents are not in control and shouldn’t be trusted. Standing by can mean praying for them at a distance, taking care of their other children for them, and being there for them when the dust has settled.  

Alexis: When I’m having a hard time and my parents are trying to deal with me I would prefer people left us alone because when someone tries to come in while I’m trying to rebel my brain clicks and is like “I can use this person to get out of trouble” or whatever is going on at that moment. I realize that my parents and I really don’t need people around us when we are having a moment like that. It will just make the situation even worse and we don’t want that and I know the person approaching probably doesn’t want that either. So I would suggest that if you see us having one of those moments just to walk away and leave us alone till it’s over.

As for the avoiding awkward and hurtful situations I would like people to know to avoid using the word “mental” or “crazy” around people with disorders like me. People with hidden special needs can sometimes take offence to those words. I know they have hurt me when I have been called these things from peers.

I would also like people to know, as my mom always says, so I quote, “A disorder doesn’t make you who you are. It only affects you. Who you are is someone who was wonderfully made and much more than a few struggles.”  I couldn’t have said it better than she did because what she said is truly how I feel about myself. I like that she sees that in me. I wish more other people would too. I wish more people would see that in people who struggle with the effects of disorders.

Miggy: What do you want people to know about adoption? Especially when it comes to adopting older children, who may or may not have behavioral and/or emotional issues, as there seem to be a lot of stigmas regarding this.

Shala: When it comes to older child adoption I would love to see more people be aware of the need these children have for family, the impact family has on their lives and the blessing they make in the lives of their family members. Yes adoption is hard. Parenting is hard enough let alone having a layer of disruption added. But it is worth every ounce of ‘umph’ because we all need family no matter how old we are. We all need a forever.

A great resource for both those who are looking to adopt or those who have already and are looking for support I highly suggest @knittogetherbyadoption instagram account. Here is where I host an adoption share-a-day using #KnitTogetherByAdoption for November’s National Adoption Awareness Month and info about our Knit Together By Adoption free adoption connection events.

Alexis: What I want people to know about adoption–this is coming from someone who was adopted for 4 years now–is that adoption will never, ever, ever be sunshine and rainbows no matter what kind of adoption you do whether it’s older, younger, private, domestic or international. I don’t want you to be discouraged by what I am saying but to know the truth. I also want to say we are not something you should fear. You should not be scared to adopt a child because they are a child. Children are not scary they are fun, sweet, interesting and they are caring because that’s what children are. You have to look past the disorder and see what they are, not how the disorder affects them. You have to see what they can be and what they can achieve. You can not focus on what they may not be and what they may not be able to achieve. You have to not think about what you want, that it is not what your heart and God is telling you to do, you got to ignore the little voices in your mind telling you “you’re too young,” “you’re too old,” “they are too much,” “they deserve a better family.” No! You are not too young!  You are not too old! You are capable! They want you! You are the family they deserve because God chose you to be their parents not someone else. He Chose You! They want you because God chose you to be their parents. They want someone to love and care for them. They want someone to correct them and guide them when they do something they shouldn’t. They want someone to help them as they deal with the struggles of their disorders. They want YOU. They don’t just want someone they want You, because you are you.  

Miggy: What is the biggest lesson you’ve learned since becoming a Alexis’ mom?

Shala: Wow that is a loaded question. Having her as my daughter has completely transformed how I see others, how I parent, my marriage, myself and my relationship with Christ. Walking this journey with Alexis and her hidden special needs has transformed me in ways I didn’t even know possible. It has exposed all my weaknesses, stripped me of all the things I once thought were important and pushed me to fight in ways I didn’t know I could. It has exposed all God’s strength, has given me eternal things that have more value than I could possibly imagine and has shown me that the ones that hurt others the most, need love the most. They need someone to fight for them to be loved. That this thing called motherhood, especially motherhood to someone who struggles, who is hurting deep, is not about you but about someone who desperately needs your all, and at the end of the day it will be the best blessing from God you could ever ask for.