Thursday, January 31, 2013

Study Links Autism, Bipolar and Schizophrenia

As I was in the process of getting my youngest son evaluated by the school psychologist, she mentioned to me that she has seen a lot of families that have both autism spectrum disorders and bipolar disorder in the same family, usually a parent or sibling. I found this fascinating and after a little research, I came across this MedPage Today article that discussed a direct link between these disorders. They even suggested that these disorders may be different magnifications of the same root causes. Check it out!

Study Links Autism, Bipolar, and Schizophrenia

Sunday, January 27, 2013

A Boy and His Cape

This weekend my oldest son, now twelve years old, was getting ready to play in the open field by our home. First he packed his walkie-talkie to maintain communication with mom, then a water bottle filled with bathroom tap water (who has time to use the filtered water from the fridge), after that he put on his sneakers, doubled-tied of course and last but not least, he tied on his floor length black cape. Yep, my boy wears a cape sometimes.

I love that my son has the guts to embrace what makes him happy, even if it draws negative attention from the boys riding their BMX bikes nearby. He remains true to himself and I love that.

Thursday, January 24, 2013

Getting the Runaround!

I spent yesterday getting the runaround from my insurance company when trying to get a referral approved for my youngest son’s autistic spectrum assessment. Because the wait for the Neuropsychologist within my provider is 8 months to 1 year, our Neurologist decided to send us to a highly regarded doctor who is in contract with our provider.

After 4 hours of back and forth calls, and a few unwarranted celebrations where we were told we were approved to go, in the end we were denied because my heath insurance places autism disorders under “Behavior Health” and our medical provider paces it under the category of “Medical”. So due to this clerical difference the amazing doctor we were waiting the last month to get scheduled with is now considered out of our reach.

This is why labels matter.

So now, I’m having to start my search all over again. Good times!

Tuesday, January 22, 2013

Stop Suicide Now!

My small community lost another young teen to suicide this week. I’m disheartened that this continues to happen. All of them have been young males who were brokenhearted over their relationships with their girlfriends. I can never say it enough, if you or someone you know is thinking about harming themselves or ending their life, please tell someone that can help. A moment of heartbreak can produce a lifetime of pain for those left behind. My friend lost her son over a year ago and everyday she fights to live on without him. It is unbearable to say the least.

* * *

If you yourself are considering suicide, please call 911 (US only) or the 24 hour suicide hotline 1-800-SUICIDE. If you just need somebody to talk to, call 1-800-SUICIDE or 1-800-273-TALK. Suicide is preventable and if you’re feeling suicidal, you must get help immediately!

For more awareness, check out these links:

Suicide Warning Signs

Suicide Causes

Bipolar Disorder and Suicide

Suicide Myths

What To Do If Someone Tells You They Are Suicidal

In the US, 1 person every 15 minutes dies from suicide. I can share from my own experience that even children can have suicidal thoughts before they know what suicide is. My son has expressed wanting to die since he was 7 years old. This was caused by a chemical imbalance in his brain making him feel depressed and “worthless”. Feeling suicidal is not a weakness that you should hide from others, instead it’s usually a symptom caused by an illness, like depression, that can be treated. Experts believe that most suicidal individuals don’t want to die, they just want to end the pain they’re experiencing. With the right treatment, life will look completely different and the pain can end in a different way. You are loved and you are worth it.

* * *

1-800-SUICIDE (1-800-784-2433)

1-800-273-TALK (1-800-273-8255)

Sunday, January 20, 2013

Exploring Ideas for Social Connections

I’m so thankful for your great ideas I received after my last post of trying to help my child fit in. Already I’ve used some, such as sharing our own stories of not fitting in so that he realizes that he isn’t the only one to feel this way. I’ve also placed calls for a social skills class in our area, but one idea has really inspired me, starting a game club!

A common thread I read in many responses was to find a group where he shares a special interest so that he can identify with them and have his own connections. Unfortunately our son’s school is very limited in this area, offering after school sports only—which he wants nothing to do with— so I’m considering the idea of starting our own group.

I’m thinking of hosting an after school game club on fridays at the school. The principal has already approved the use of a room, as long as I’m the chaperone. The club would focus on what my son likes to call “nerd games” such as Bakugan, Pokemon and other similar games. We’re thinking of planning tournaments and introducing new games as well.

Right now most of the kids may come from my son’s study skills class which is comprised of kids who have IEPs or 504 plans. Most of the boys in his class like to play these games during lunch, but unfortunately they get a lot of ridicule from the other kids in school.

One of the foreseeable challenges is getting my youngest son on board since he doesn’t like to do much out of our home, especially after school. But one mention of making him in charge of check-in has earned us enthusiastic support, as he said, “Sure, I get to be in charge of 6th graders, yay!”

My oldest son is completely in love with the idea and can’t wait to see what kind of interest he can draw in the club. It’s imperative that we have enough kids, the last thing I want to do is have a babysitting club watching one or two additional boys after school. So next week he’s going to see how many kids could stay after for this club and from there we’ll determine if we can move forward with the idea. In the meantime, the boys are already thinking of their club logo and planning the tournaments they want to participate in.

As for me, I’m feeling a little nervous about taking on another responsibility, but feel it may be worth it in the long run.

Thursday, January 17, 2013

How Do I Help My Child Fit In?

I don’t know what to do.

My oldest son came home in tears last night after attending a friend’s youth group he was invited to. It was the straw that broke the camel’s back.

“I don’t fit in anywhere.”

It didn’t appear that anything bad happened, instead he had trouble connecting with the other kids and was anxious in a new environment. The boy that invited him to the group left him to follow along, so he didn’t feel included or embraced by the group. In response, he sat alone listening to an audio book with his iPod.

Middle school is getting tough socially. He’s being called a nerd, a loser and is being pushed around by the older kids. I know some of the problem is the cruelty of kids and the other challenge is his inability to feel comfortable in social settings. When he feels uncomfortable, he withdraws, which then continues the cycle of not fitting in.

I tried to encourage him and remind him that things will get better, but he quickly reminded me that he’s been trying for 12 years now and it isn’t getting better.

Earlier this week, his teacher read an essay about the negative impact of bullying. It gave an example of a girl hanging herself and a boy shooting himself in the head in front of his class after being bullied. This really freaked my son out. He came home crying saying that he was afraid that this would happen to him because he’s been bullied in the past. (I did confirm that at this time he’s not having any suicidal thoughts).

A part of me wants to homeschool him and remove him completely from his social environment, but he’s so resistant to me teaching him that it would be impossible. I’ve also offered to switch him to a smaller school setting, but he rejects the idea since he’s already use to this school and doesn’t want to start over.

Our therapist taught my son to “fake it” in social settings until it feels natural, but he tells me that this isn’t working.

It’s killing me to see him hurting like this. I just don’t know how to help him.

I need your help.

What can I do?

Tuesday, January 15, 2013

New Drug Better Than Lithium?

In the news this week, a British study has announced that they have identified a new drug called Ebselen that is as effective as Lithium, currently the gold standard for Bipolar Disorder, but without the side effects such as weight gain, thirst, and potential kidney damage. I find this to be very encouraging news! It’s still in the research stage, but I look forward to following this drug and hope to see this as a safer option in the future for the Lithium my oldest son is currently taking. Check out the details in the HuffPost article by Kate Kelland:

Sunday, January 13, 2013

Getting Familiar with What I Already Know

My experience in having my youngest son assessed for autism spectrum disorder has taken me for a bumpy ride. At first, I went through a period of grieving that made it hard to eat and sleep. This was surprising since I never went through this stage with my oldest. Sure, I was devastated at times, but I didn’t struggle with a feeling of loss so abruptly. I think it was due to my desperate need for my oldest son’s rages to stop and my understanding early on that he had a brain problem. Where with my youngest, I had always believed it was just a stage that he would eventually outgrow. Next, I struggled with my guilt and shame for not seeing my son’s symptoms sooner, I felt like a terrible mother who now had 2 kids cursed with a disorder. As I started getting down to business, preparing for our appointment with the Neurologist, I was forced to face all the unknowns and to explore a world I was unfamiliar with. What followed was a long, slow exhale and a feeling of peace.

I thought the world of autism was foreign to me, but after reading a pile of books and doing online searches about the spectrum, I discovered that this is not uncharted territory, instead I realized that this is my son. I know this world already, I live it everyday.

No matter what the final diagnosis is, I’ve realized that my son is my son and no matter what label you give him, he’s still the boy I’ve loved everyday. Though he has challenges that make life tough, he has a personality that I adore. His unique life perspective blesses my life and he brings me so much joy. Though I wish he didn’t struggle with so many things, I would miss his uniqueness if he was wired differently—who else would wear red rain boots everywhere he goes in the dead heat of summer?

Today I’m no longer afraid, instead I’m excited about the possibility of improving his life and I’m looking forward to all that he’ll teach me along the way.

* * *

The other night we took the boys out to dinner for spaghetti. As the dishes were being served my middle son reminded everyone to put their napkin in their lap before eating. My little one laughed out loud and said, “I’m not fancy!” then proceeded to wipe his face with the back of his hand.

That’s my boy!

Wednesday, January 9, 2013

“Looks Like Autism Spectrum Disorder.”

There we are... sitting in the office of a Pediatric Neurologist waiting for my youngest son to be evaluated for Autism Spectrum Disorder. As we sat there, my little one moaned with discomfort about being in a new place. To distract him, I handed him a magna doodle to use while we waited. A moment later he handed it back to me with the words, “Why did you take me here?”

It’s an appropriate question since I too feel surprised to be headed down this path. Autism has never been on my radar. Besides the bumper stickers I see, the occasional blog post I read or my own personal experience in babysitting a child with autism for 3 years, I never thought my own child may have it.

I can just envision some of my readers saying, “Hello??!! Isn’t is obvious?” I even had one follower, Meg from Raising Bipolar, question this about my oldest son about a year ago because of his sensory issues, but I easily dismissed this since he was very different than the child I babysat. Little did I know that the autism spectrum is very wide. You can have children that can’t speak on one end and on the other end have children who can talk circles around you. I recently read that if you’ve met one child with Autism, you’ve only met one child with Autism. Interesting huh!

In my usual fashion, I went into serious research mode to prepare for this meeting. After years of doing the “diagnosis dance” with my oldest, I didn’t want to waste any time and I wanted to give the neurologist the clearest picture of my youngest son. In doing so, I pulled together all of my notes, even categorizing them by symptoms, making them as easy as possible for the doctor to process. I watched family videos and read through old journals that I wrote about the boys. Then I interviewed 6 family members (most had no knowledge of what my son was being assessed for) and all of his teachers since preschool to have them give me their observations of my youngest son. To my complete surprise here’s some of the feedback I received:

Family Member 1:
When he was 2 years old I thought he was autistic because he didn’t want to play with all the other kids, he was always playing by himself and was content. He seemed too independent for his age. As he got older, I thought he must have Aspergers because he was very smart, but didn’t socialize with other kids when I was babysitting him. He has a strong need for structure and gets very upset when things don’t go right, his reactions are very extreme for the circumstances.

Family Member 2:
When he was 2–3 years old he showed what looked like “autistic” symptoms. At the time, my daughter (3 months older than him) was in a social group to help autistic kids socialize and I noticed that he played like the autistic kids in the group. At the time I checked to see if he would give me eye contact and smile and he did so I was relieved. I noticed that he wasn’t as verbal and gets upset really easily. I also thought it was unusual that he was content playing by himself for hours when he was surrounded by kids who he knew.

Family Member 3:
I remember when he was around 2 years old that he appeared to be on the spectrum and has since thought it for years. I remember from a young age that he wouldn’t look at me when I tried to engage him. He would also repeat things over and over. Today I notice that he doesn’t look at you and doesn’t engage in conversations. He also doesn’t know how to respond socially but will follow if taught how to do it.

Family Member 4:
He seems to get stressed out when around all the kids at family gatherings and seems happiest when he is playing alone. I also thought he always talked in a unique way, like his own accent or language style.

Family Member 5:
We have noticed over the years that he talks “at” us and not to us. He often looks to the left or the right of us when speaking. He has a unique way of speaking, we noticed that he use to put “ya” at the end of words. He also has no filter. He doesn’t have the ability to take his moods out on others. We have also noticed his fixation with electronics. He would rather play with them instead of other kids. We have also noticed his moodiness and food issues.

Family Member 6:
I’ve always had a hard time connecting with him and getting his attention. He doesn’t seem to connect with other people. I’ve also noticed that he quotes movies a lot word for word and becomes very explosive if he loses a game.

The teacher notes were much longer, but to sum it up, they talked about his tendency to play and work alone and that group activities were very difficult for him. They explained that he has trouble with noises in his environment and becomes upset if students are too close to him. His reactions are explosive and intense. He has the ability to focus for a long period of time on an activity if done alone but has a hard time focusing on a teacher talking or giving instructions. He is very creative and has a great imagination and performs well academically.

Then there was my own collection of notes, which to be honest was ridiculous since they were classic spectrum stuff. From language issues, sensory issues, eating issues, emotional issues, social issues, behavioral issues and school issues—they all looked like symptoms of Aspergers.

Wow! I was stunned after collecting all this information. How did I not see this? How did I not know?

As I reflect, I can see obvious reasons why this didn’t occur to me. First, we were going through our toughest years with my oldest when my youngest was showing these early signs of independence. I honestly saw it as a bonus. If I was dealing with my raging son for 3 hours, it was a blessing that my youngest son was content and happy in another room. Unusual yes, but never something that concerned me, I just thought he was an independent child who adapted to our circumstances. He always seemed to smile at me and give me eye contact and if he buried his head into my arms around other people I just thought he was shy. The fact that he played with his shadow or would talk in his own language when he was young was just his quirky nature, along with all of his other quirky personality traits, to me it wasn’t a symptom, it was my son.

As he got older, his sensory issues seemed to be something he inherited from his brother and his lack of desire for playmates seemed to be a side effect of not being able to have kids over because of his brother’s issues. If my youngest son threw explosive tantrums, I assumed he was copying the behavior of my oldest and the autistic child I babysat, it never occurred to me that he was having similar challenges. 

Then when his anxiety and depression appeared, I did become concerned. This led me to 2 separate therapists who at the time told me it was Post Traumatic Stress Disorder or an Anxiety Disorder, which was most likely triggered from his fear of living with his raging brother. But last week our Psychiatrist informed me that anxiety and depression commonly occur with children on the spectrum. I never knew that.

Honestly the list goes on, but I think you get the point.

As much as I can make sense of why I didn’t see the spectrum symptoms before, I still feel terrible guilt and shame as his mother. I should’ve seen this. It’s my responsibility to take care of my boys and I didn’t see what was going on, even though everyone else saw it.

So there we are, waiting in the hospital room for the neurologist to review all of my notes. When he comes into the room he kindly says hello and reaches out to shake my son’s hand. My son shakes his hand without ever looking up.

Then the doctor said with a tone of appreciation, “Your notes were so helpful, in fact, they’re the most comprehensive notes I’ve received in over 10 years.” Then he said, “based on everything I read, it looks like textbook autism spectrum disorder.” Then he added, “Even the school psychologist’s observations were clear to me, it’s like she was screaming, this kid is on the spectrum!”

He then explained that the depression and anxiety appears to be real and that it’s possible that my youngest has both spectrum and mood disorder issues. He then explained that the next step was getting the official evaluation with a Pediatric Neuropsychologist who will do a 3 hour evaluation of our son and determine if he will receive the official diagnosis.

As a word of warning, he told me I should have my oldest son evaluated since autism runs strongly with males in the family. I then asked, “Is it possible that my oldest son’s sensory issues and need for structure can be related to a spectrum disorder?” He kinda chuckled and said, absolutely! He then explained that sensory issues are spectrum features, not mood disorder features and he pointed out that his own mother has a mood disorder and that these individuals usually dislike structure of any kind.  “It’s possible your oldest has a mood disorder and spectrum issues, it’s not uncommon, I would definitely have him evaluated too.”

So now we’re waiting to see the Pediatric Neuropsychologist for the complete evaluation and definitive diagnosis. Hopefully sometime next month. As you can imagine I have a lot of mixed feelings I’m trying to sort out. But more than anything, I have hope.

Sunday, January 6, 2013

Score One for Our Family!

This weekend we got to experience the ordinary and it felt extraordinary! Our middle son played his first basketball game in our city league. I know millions of families do this every weekend, but for our family, this was a first since we’ve never been a part of organized sports. But there we were, on the sidelines with grandparents too, all cheering on our middle son as he made his first basket and his team walked away with a victory. I was so happy I teared up.

My husband smiled at me during the game and said, “look at us, we have one kid playing sports and another (our youngest) is socializing—we’re like a normal family!” Our oldest son chose to say outside for half of the game. When I warned him not to talk to strangers and to come inside if he was approached, he smiled and said, “don’t worry mom, I have a stick!”

It was a perfect moment, one I’ll never forget. Even though my son’s team won the game, it felt like a victory for our entire family!

Thursday, January 3, 2013

Being the Other One

I want to recommend a very helpful book I just finished because the subject is dear to my heart. It’s called Being The Other One: Growing Up with a Brother or Sister Who Has Special Needs.

One of the many challenges our families face is the impact our special needs children have on their siblings. I think we’ve all seen it, whether it’s the abuse, the stress, or just being a difficult playmate, our kids face very unique challenges that if not addressed can lead to future problems.

This insightful book is written by Kate Strohm, a counselor, health educator, and director of Siblings Australia, a program that provides resources and support for siblings of children with special needs. Kate also has her own experience having a sister with cerebral palsy. This book does a wonderful job of sharing what our children are experiencing and what we as parents can do to help our kids thrive under the circumstances.

Over the years I’ve made a conscious effort to give special attention to my middle son who is often lost in the chaos or left to fend for himself as I try to regain peace in our home. I’ve established an open line of communication where my middle son can request “alone talks” where he can express his fears or frustrations about his brothers. He seems to really appreciate this. In addition, I’ve taken him out for special “Mommy dates” where he can do something fun without the sensory limitations his brothers bring as well as serve in his classroom so he can feel that I’m invested in him too. For the first time, he’s participating in a sport so he can have his “own thing” and expand his social life outside our home and this week he’s meeting with our therapist to work on any feelings he may have. But with all that, I still have moments where I fall short.... way short of doing what’s best for my middle son.

More than once I’ve been guilty of not having patience with my middle son when he has a weak moment, I expect him to always have it together, which is completely unfair since I can’t even do this. I’ve also been quick to make him give in to a situation just to keep the peace, something that I no longer do, yet I still feel terrible about it. Also, I don’t always acknowledge what feelings he may have after a rage, instead all my focus goes to the child who was on the floor, not the kid who sat alone in another room waiting for the storm to pass. I also recognize that he doesn’t get to have play dates because his brothers have embarrassed him in the past, he doesn’t get to do typical fun outings often because the other kids can’t handle crowds or loud noises and he has to live in a home where he’s scared of his own brothers. And the list goes on... boy do I hate this list!

The reality is that I can’t make his brothers’ challenges go away, but I can become more aware of what his needs are and go from there. For me, this book did that. It helped me understand what my middle son is experiencing and what I can do to make the best of our situation. This book also brought me hope, teaching me that under the right care, our kids can overcome these challenges and be better people in the world because of it.

 * * *

This book was not given to me and I was not asked to review this book. I found this book at a Barnes and Noble book shelf.

Amazon Link to this book:

Tuesday, January 1, 2013

A Smile I Don’t Recognize

Recently I had lunch with my youngest son at school. It was a special occasion that he looks forward to every year. I’m convinced that he anticipates the happy meal from McDonalds more than the visit with mom, but that’s ok, whatever makes him happy.

As I sat on the long lunch table surrounded by second graders eating their peanut butter and jellies or their hot lunches, my little one sat with his back to me, focused on a movie the school was showing on this rainy day. Throughout the lunch I tried to engage my son with questions and silliness, but he wasn’t the least bit interested in me, which was ironic since the little girl to my left was giving me an earful!

As the lunch came to an end, I asked my little man if I could get a picture of the two of us. To my surprise he was willing, something that hasn’t been too common over the past year, so I jumped on the opportunity by taking a handful of shots with my phone.

As I got to my car I previewed the images to see if there was anything I could send to my husband who was busy at work. And there it was... absolutely beautiful. Shining up at me was an image of my son with the biggest tooth grin I’ve ever seen him make. I could see all of his teeth from ear to ear, even his eyes were smiling. Then it struck me. I don’ t recognize this smile. I have a bunch of photos of this boy and I’ve never seen this smile. Over the year his smile has become contained, no teeth, only a sly grin revealing little emotion, or just plain irritation. But today, I could feel his happiness from the inside out and I couldn’t help but giggle.

Thank God, the medication is working.