A Diagnosis Changes Everything, Or Does It?

For those of you have had to deal with an autism spectrum disorder (ASD) getting to a diagnosis can be a long haul. Frequently this process is fraught with multiple doctors, multiple referrals, struggles with the school, and tons of frustration. Our family dealt with many of these issues, the largest of which was our frustration as parents.

My husband and I, like most parents, want their children to have happy and healthy childhoods. We want our children to be successful in all that they do. When you deal any kind of difficulty with your children you want answers and you want them quickly. When dealing with behavior and concerns with mental health you end up going to see a lot of people. As a therapist, I am often referring to these providers. Running between them all is exhausting and at times overwhelming. For me, perhaps because of my occupation or just because I want the best for my children, running between all of these appointments actually made me feel like a bad parent, like everything that David was dealing was my fault for not parenting right.

If you have not had therapy, intake sessions consist of sharing your life history; current information, life history, medical history and family history. With each new provider we have had to retell "the history" of our son. We have each section of social history picked apart to help improve treatment, give the best picture for diagnosis, and to give David the services he needs. Each time my husband and I worry we are the contributing factor in David's difficulties. And despite the fact that we believe/ understand that there is not always a biological explanation for ASDs, it is still difficult to not speculate about whether or not you are at fault.

After several difficult months, David's therapist suggested looking into an ASD. At first I was in shock, but after sitting with it, going through each diagnostic point, step by step with his therapist (mind you this was at 10 o'clock at night while I am sitting on my kitchen floor trying to figure out if I need to have my son hospitalized due to self injury), I was able to see where he was coming from. Maybe because I have clients with ASDs, once I heard the therapist's concerns and looked at each one individually I accepted that we were going to have to have David assessed for an ASD. I had also expected that we would end up with an ASD diagnosis.

After that first discussion with David's therapist, I thought I was ok with looking into an ASD. I mean it seemed to make sense because David fit so many of the diagnostic criterions. But as his behavior, specifically his self injurious behavior, continued with little improvement for medication adjustments, I began to doubt my ability to deal with the scope of David's needs. I found myself questioning and worrying about how he will navigate his life. I worried if he would make more friends, or if he would ever find love. And despite the fact that I know everything and anything is possible for him, I grieved the ideal son I had created in my mind since he was born. It seems ridiculous, considering the fact that David is extremely high functioning, incredibly smart, funny, and all around wonderful. I have no doubt that he will achieve everything and anything he wants to in life. And yet for that moment, there I was a pile of tears going through all of the "what if's". This process has been extremely hard for my husband. Despite all the facts about ASDs, Brent struggled with the idea of an ASD diagnosis. During David's first ASD evaluation, Brent had alternate reasoning for each criterion that he met. And even after his diagnosis was confirmed by neuropsychological, Brent struggled. He worried David would be seen as disabled. He worried that David's peers would bully him. He worried about what kind of treatment he needs. He worried if it was his fault.

While we as parents have struggled with this diagnosis, David has continued on; reading books, playing Pokemon, playing with his friends, and being our amazing and wonderful son. At the end of the day the diagnosis, means little. David is the same child he has always been, but now there is a fancy name to describe his behavior. Which is exactly the point, David is a nine year old with an autism spectrum disorder; it is something he has, notsomething he is. David is my amazing son.

Our Amazing Family

My children are special, but when did they become special needs?

My boys are amazing little creatures who challenge, excite, laugh, and play their ways through each day. They also have a knack for driving me, my husband, and each other crazy. They are special, each in their own way. Each with their own individual characteristics which make them wonderful, that make them special.

David and Joaquin are night and day. David likes to stick to himself. Joaquin is a social butterfly. One of the things they have in common, other than being brothers, is the fact that they both have special health needs. David has been diagnosed with ADHD since he was 5. He has been treated with medication management and therapy. This past fall he was diagnosed with an autism spectrum disorder. He also has severe allergies and asthma which have been treated since he was two. Last year David was diagnosed with a sleep disorder, which caused David tocollapse at school several times and leading to a lot of testing and a lot of missed school. He presented like a child with silent seizures, which led to EEG testing and trips to the neurologist. With 5 specialists at two different hospitals and multiple doctor's office we spend a lot of time going to the doctor.

Joaquin has had multiple health issues since birth. He was born a smurf, meaning he was blue and barely breathing. After several attempts to work on him and get him breathing, he was ultimately taken to the NICU where he stayed for two weeks. During his time in the NICU we learned he had severe reflux disorder and apnea with heart rate decelerations. When he finally came home it was on a heart/apnea monitor, which he had for six months. Shortly after Joaquin was released home, we found out he had an anaphalatic allergy to latex. We then found, as we began introducing solid foods, that he was allergic to dairy, soy, and bananas (a common allergy in conjunction with latex). As he reached a year we found he was also allergic to eggs and tree nut. As Joaquin has gotten older he has been diagnosed with asthma and seasonal allergies as well. He further has auditory and tactile sensory issues. Joaquin currently has three specialists he sees regularly. As I said we spend a lot of time going to the doctor.

So while I find my children unique and special, many see them as special needs. Just like all children they have special needs; love, compassion, encouragement, and yes, they do have special medical needs. What I have found through the process of being a mom (and a therapist, for that matter), is that while labels (diagnoses) have importance in terms of treatment, they do not define who or what my children are. My children define who they are and what they will be.

David and Joaquin

November 2011

Go Bears!

2011

Tubing

January 2011

At the Arboretum

2010

Styling in their Shades

2010

Brothers

Summer 2008

Kermit - "It's Not Easy Bein' Green"

Green

As the therapist who uses a great deal of art in her work, every color has meaning. In art therapy colors relate to feelings, transitions, and change. Green is the color of growth. When I see green used in a project I find myself reflecting on the client's growth, change, and progress in the session, throughout the task, and in treatment as a whole. Sometimes it takes a long time to get to green, and other times green comes quickly and steadily. Regardless, green signifies change and growth are happening.

David's favorite color is green, thus it seemed fitting to have a blog about him and his journey be colored in green. It is also fitting because throughout the process of seeking a diagnosis, finding appropriate treatment providers, and treatment, change and growth has been a constant. Don't get me wrong there has been a great deal of time with stagnant progress, dealing with the school comes to mind first and foremost, but despite that, we have been searching out change, progress, and growth for David and for ourselves as individuals, parents, and as a family.

Now not to get too stuck in a Muppets theme, I think Kermit had it right, "It's not easy being green." David is aware of how he differs from his peers. Due to his social awkwardness and social immaturity and has been an easy target for bullies. He, like all children is hurt by the taunts and being made fun of that exists. He gets frustrated when he has missed school due to appointments, therapies, or medication related illness. He is frustrated by his peers’ constant questions about why he was absent or late. When he comments he was sick or had to go to the doctor, he is questioned about what he was sick with and or what doctor he had to go to and gets frustrated because he doesn't want to answer for fear of being considered even more different.

The thing is David is different... he is unique and wonderfully so. David like many young boys and many children with spectrum disorders is obsessed with dinosaurs. He has been since he was little, and has been spouting off the names and facts about dinosaurs since he could talk. His knowledge of dinosaurs grew as he started reading, and now is exceptional. David can name just about any dinosaur and is able to spout off facts about any dinosaur he is asked about. In fact during his first neuropsychological interview the doctor asked about a random dinosaur (one I have never heard of) and David was about to tell him what kind of dinosaur it was and when it lived. Naturally he wants to be a paleontologist. And while most kids go through phases of wanting to do different things and be like heroes in their lives (i.e. fire fighters, doctors, athletes) David has always just wanted to be a paleontologist, dreaming of discovering a new dinosaur or working in a museum. We live in the Chicago-land area and so we have spent a great deal of time at the Chicago Field Museum of Natural History, currently home to Sue the most complete T-Rex that has been found to date (well at least to my knowledge). That is what they say at the museum, but clearly I am no expert. Maybe I will ask the expert when he gets home from school. David loves getting lost in the dinosaur exhibit, taking in the facts, information, and sheer magnitude of the creatures that existed long ago. He could spend hours in the exhibit and watching the paleontologists working in their lab (the museum allows window access to the scientists working in their various labs). His love for and knowledge of dinosaurs constantly amazes me.

David is wise beyond his years, understanding advanced academic and social issues (meaning issues of society). He is a talented artist, and is continuing to advance in karate towards his goal of becoming a black belt. This said his social interactions, interpersonal skills, and ability to self regulate his emotions are lacking, making him an easy target for bullies. His social awkwardness contributes to his limited peer relationships, and his desire to engage in individual activities. He deals with being different, while trying to grow and change daily. He, like all children, wants to be liked by and accepted by his peers. He works hard to fit in and we as a family work hard to learn all we can to help him do just that.

It is not easy being green... being different is difficult, sometimes sad and lonely; but being green, growing, changing, and making progress in one’s self, while difficult and challenging, is the best kind of green to be.

Rainbow Connection performed by Sarah Mclachlan

This is one of my favorite versions of this song

What's in a name...

Why Rainbow Connection? When I think of a spectrum, I generally think of rainbows and the spectrum of colors that appear like magic in the sky when water and light reflect. The colors often range, sometimes from red to purple, and at times with less or seemingly more colors. I have also noticed Rainbows come in all shapes and sizes. While I know a rainbow is an arc in shape, sometimes one can look like a line of colors (when you only see half of the arc); the arc can be a large arc taking up the sky; or smaller, perfectly shaped and easy to see. Just like the ranges in variations that exist for rainbows so exists the variations of functioning, progress, and treatment in and for Autism Spectrum Disorders.

Now to be honest, I think the name also was influenced by the Muppets. The Muppet movie had just come out when I first started thinking about starting a blog. And like many people one of my favorite songs from the Muppets when I was growing up was and still is "Rainbow Connection." I love the meaning in the song and how it inspires hope and belief in the possible.

As a side note... our street name also happens to be Rainbow. Just one more reason it seems fitting.

Why blog?

My 9 year old son David was recently diagnosed with Asperger's Syndrome, a diagnosis which falls on the Autism spectrum. The past year has been really rough, and while we have always thought of David a quirky, the diagnosis has at times been hard to swallow. Being a mental health therapist myself, I have had to work with many clients diagnosed with Autism Spectrum disorders throughout the years. This said, a diagnosis is never more real than when you have to deal with it at home. So after thinking about it for the last couple of months, I have decided to blog about our family's journey through the maze of doctors, therapists, school IEPs, and all the other crap a family deals with when you have a child diagnosed with an autism spectrum disorder. I by NO means consider myself an expert. I am merely a mom who needs an outlet so I don't go crazy.