Boundless Joy Arising : May 2011

5/27/11

A Snapshot of Yelena

I stopped at the grocery store the other day on the way home and Yelena decided to stay in the car and start on her homework. When I got back to the car, she had the passenger side sun visor in her hand and it was clearly broken. She was visibly distressed and said: "I'm so sorry. It was an accident. I didn't mean to do it. Are you going to be angry with me?" I said "Well, I can't say that it makes me really happy that it is broken." Yelena responded angrily by saying "You blame me for everything! All you want to do is get me in trouble!"

ABOUT THIS BLOG:

A little over ten years ago, my husband and I made a journey to Perm, Russia to adopt a beautiful baby girl. We had both dreamed for years of having a daughter. Every parent has expectations for their child...

We are now parenting a child with Reactive Attachment Disorder.

I will not use any real names to protect the privacy of our daughter, our family, our friends and the many professsionals who have helped us along the way. I will, however, use the real name of the town we live in. We live in Waltham, Massachusetts. Our daughter came to us with the name Yelena (meaning: the light of the sun) and that is how I will refer to her here. When I started writing this blog, Yelena had just turned 12 years old. We traveled to Perm in 2000.

Recently, I have come to feel that I need to document our journey with Yelena and have decided to use this blog for that purpose. I am sorry that I didn't start writing earlier when everything was still fresh in my memory. I am where I am now and I need to start from there and I am sure that a lot of the rest of the story will come out inbetween the lines.

A friend asked me why I picked the title Boundless Joy Arising. It is because this is what I wish for - for myself, my child, my family and my friends.

NOTE: I started this blog in 2011 and have added to it sporadically since then. So, the beginning line "A little over 10 years ago..." is not totally accurate and I am going to leave the number where it is and not continuously update it.

ABOUT US:

One of the most bewildering aspects about having a child with any kind of special needs is the lack of imformation and resources, the lack of real help from the school system and the lack of support from other parents. It feels like you are the only person who has ever gone through this and yes, partially, that is true because your child is unique. There are programs for children with different diagnoses but most children don't fit neatly into any of those boxes so you feel like you are starting from square one with no help.

I have to start out by saying that I am an architect, an artist and I have an M.A. in Psychology. I now practice as an Art Therapist. My husband is a L.I.C.S.W. who has spent his entire career in the health care field, many of those years in an insurance company dealing with mental health and substance abuse issues and now has a private psychotherapy practice.

Given that we are both highly educated professionals, when we started out, I had no idea how to get my daughter what she needs and after many years of trying, I still don't. That is not to say that we have not had many dedicated professionals who have been trying to help us who I am sincerely grateful for. In some cases, it has taken us years to find the right people to help us.

We have finally found a wonderful woman who specializes in pediatric psychopharmacology. We have come a long way from the first doctor who prescribed ADHD medications for Yelena who when I asked him why he was diagnosing her with ADHD said something to the effect of "See that, she is turning the light switch on and off. All of the ADHD kids turn the light switch on and off." Hardly, a professsional method of diagnosis...

I started out knowing absolutly nothing about special education. The school system said that they had the right class for her and I signed her up. The next year, they recommended another class and I agreeded believing they were the professionals and knew best. The next year it was another different school and another different classroom. After four years in four different schools in Waltham, I had to stop and ask what was going on. I am still asking the same questions. It can be a full time job to have a child with special needs. I am no where near to understanding what Yelena needs and how to get it for her. But I must say we are doing better and better.

Special needs last a lifetime.