Mental Health, Stigma and Honesty

I previously wrote a blog post about what I say when people ask me about Bryce. It is a difficult question to answer. I am an advocate for mental health awareness and for my son. I am a stigma fighter. I help raise awareness for mental health, I advocate for mental health reform. I volunteer for the Crisis Text Line, for Sheppard Pratt Health Care Center. I worked with adults with severe mental illness. I write this blog. My goal is to make people know that it makes you strong, not weak, to get help and that mental illness is no different than any other illness.

I have never shied away from telling people that Bryce had a mental illness, but it has often been difficult to explain or find the right words to describe him. It is sometimes difficult because you worry about how others will react or what people know about mental illness. It has also been frustrating because it has been confusing as to exactly what Bryce’s diagnosis is. When I asked my husband Terry, he says that he tells people simply that Bryce “has serious mental health issues”. For me, it depends on my own mood what I say. Sometimes I say that Bryce has severe special needs. Sometimes I say that Bryce has severe mental illness or that he has Bipolar Disorder, ADHD, Anxiety and developmental delays. That is a mouthful.

Yesterday we received the results of his most recent psychological and educational tests. The results stated that Bryce meets criteria for a child with Autism. Finally. We have tried to get that diagnosis for years. The doctor who did the testing and analyzed the results stated that Bryce probably always met the criteria. As of yesterday, I can say that Bryce is a child with Autism, Depression and Anxiety. It is a clear diagnosis and easy to say. I can say it again. Bryce is a child with Autism, Depression and Anxiety.

Nothing has changed between the day before yesterday and yesterday. Bryce is the same child today that he was last week. He is the same 14 year old he was two weeks ago, but he has a new diagnosis, a new label, a new way that I can described him. I have been given a new way that I can explain his behaviors, his quirkiness, the reasoning behind why he is the way he is.

But, along with this new diagnosis and label, I also feel guilty. I like the new way I can describe Bryce. Why? It is easier, clearer and of course, comes with less stigma. Yet, I am the one that is outspoken and fights stigma. I am the one who says it is ok to say you live with a mental illness. Bryce still has a mental illness. He still struggles everyday. But now we get to say Autism. Not one mention of Bipolar Disorder in the new report.

I want the stigma of mental illness to go away. I want people to think the same way about someone with Bipolar Disorder that they do about someone with cancer. But, even for me, even for someone who is an advocate for mental illness, it is easier to tell someone, Bryce is a child with Autism than Bryce is a child with Bipolar Disorder. It is also easier for me because it is less scary. Less scary that Bryce might hurt himself. But in reality, he still has suicidal ideation, he is still anxious and he still struggles with school.

So, does it even matter? I don’t know. I wish that I did. I want to say that it is not true. I want to say I am better than any words or labels. I want to say I am stigma free. I thought I was. But maybe all of us have a little stigma inside of us. We can only do our best.soical-stigma

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Never Give up HOPE

Having a child or a loved one with severe mental illness is difficult. Finding out the news and getting the diagnosis is nothing anyone wants to hear. The same can be said for getting the news of any illness. It is hard, scary and you probably do not have all of the information that you need at the time. Parenting is tough enough and now there is a new wrinkle in it. But, if I can give a parent advice for when you find out that your child has a mental illness, a severe learning disability, or Autism – Do not ignore it and Never give up HOPE that things will get better.

We learned early in his life that our son Bryce had severe learning disabilities and mental illness. When he was exhibiting the most severe symptoms and treatment was not yet working, I remember being told to prepare myself that the only option may be a Residential Treatment Center. I was told that things would get worse. At the time he was only 8 or 9, but his therapist and psychiatrist warned me that when he got older and stronger than me, he probably won’t be maintainable at home. It will be a safety issue. He may have to live elsewhere.

I remember thinking that I could not accept that. I did not adopt a child and become a mother for my child to live away from me. There had to be other options. I would do everything I could and not give up until things got better. And if they did not get better, I would make whatever sacrifices I had to in order to keep my family and my son safe. I would not give up. I was told that I may not have a choice. But I would keep fighting.

There is nothing wrong with Residential Treatment and it can be a good option for some children. Bryce did stay in the hospital for more than 30 days at one point. I know that when someone struggles with any illness, including mental illness, that choices have to be made. Sometimes treatment is scary, and that is ok. Find out as much information as possible, get second opinions, ask questions and do what you need to do.

That is what we did. We asked questions. We tried medications, hospitals, schools, therapies. We worked. Bryce worked. His teachers worked. His doctors worked. Everyone worked. It took a lot. It took trial and error. It took a village. It took Hope. It took Not giving up.

Our life is not perfect and it is not always calm, but we get through each day the best we can. Bryce probably plays way too many video games and gets away with a lot. He is behind in school and struggles with many daily activities. Do things happen that are unpredictable and scary? Yes. But for the most part, it is ok.

This past weekend was my fabulous niece Julia’s Bat Mitzvah. Bryce had a great time. He participated and he danced. What no one knows is that about an hour before the ceremony he was outside crying and screaming that he couldn’t take it. He wanted to die and run away. He asked for money to get on a flight to go back home. Tears were streaming down his face. He pushed and shoved me to get away from him. He tried to run.    

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Bryce (far right) and his brother and cousins at Julia’s Bat Mitzvah

But I stayed calm. Terry stayed calm. No one else even knew this was happening. We have been in this situation many times before. We know what to do. We know how to handle it. It could have escalated, but it did not. We gave Bryce the space and time he needed. We know the words to say. He was able to pull it together.

Do I worry something could go wrong? That he really will run or hurt someone or himself? Absolutely. Everyday. I worry about other people or even the police taking something he says wrong. Yet, when it comes to our day to day lives and the safety we used to worry about, I have confidence in Bryce knowing how to handle his moods and in myself on how to deal with it as well.

I did not give up, I have hope and always have and always will.

So, I repeat to you – if your child is struggling and out of control – don’t lose hope that it will get better. Keep trying treatments, therapies, medications, different schools, etc. It may take time, trial and error and patience, but there is a fit and you will find it. Mental illness does not have to mean that life will be terrible. Like most illnesses, it can be maintained, controlled and coped with with the right treatment, education and understanding. There will be bumps in the road and there will be challenges; however, that is true with anything.

Keep reminding yourself that there are so many therapies, medications coping skills and different environments. Behaviors and feelings change over time – with practice, patience and hard work. They do not change overnight. There is not a magical cure for mental illness. It takes time to find stability and calm, but it can happen. It has happened for us – and HOPEfully it will last.

If you want advice or guidance, feel free to reach out to me. I have been there. And I am also trained as a crisis counselor.  If you are someone you know is in crisis, text HELLO to 741741.

 

IEP Review – To Ask or Not to Ask

When I received the letter that it was time for Bryce’s IEP meeting, I knew I had some decisions to make. This was the year of Bryce’s three-year review. In addition to just reviewing Bryce’s goals for the year, a decision would be made if additional tests or questions needed to be answered in order to adequately “program” for Bryce’s education.

An IEP, or Individualized Education Program, is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services. A mental illness, learning disability or autism all can be considered a disability under the law. When you already have an IEP , each year at the review meeting, a large team of people sit around a table and discus the student’s progress and goals for the upcoming school year.img_5237

An IEP meeting can sometimes be confrontational or difficult since the parties involved do not always agree or what is in the best interest of the student. Often the parents want something different than the county or school officials want. At times, educational consultants and attorneys are needed. Luckily, ever since Bryce has been at The Frost School, our meetings have been non- confrontational and everyone has been on the same page.

As I mentioned, every three years, there is a question at the meeting to determine if there is a need for a full review.

Since Bryce’s school – The Frost School -actively participates in drafting the IEP, prior to the meeting, they called me to ask if I had any questions or what I thought about the three year review. They stated that the knew Bryce well and felt they could program for him adequately. I thought about it.

Bryce already gets full Special Education services, Occupational Therapy and Speech therapy. – all fully paid for by our county. He pretty much gets the maximum. Social skills and equestrian therapy are included. He is in a class with a 4:2 ratio. There is a social worker for his program and a behavior teacher. They teach life skills like hygiene and landscaping. I really can’t ask for more.

Or can I?

It took a long time to get Bryces IEP. When Bryce was evaluated years ago and initially qualified for Special Education services, the only disability he qualified under was Emotionally Disabled.

Just like Bryce’s diagnosis of Bipolar Disorder – an IEP coding of Emotionally Disabled has limitations and a stigma attached to it. In fact – in Maryland it is called Emotionally Disabled, but the federal law still uses the term “Emotionally Disturbed.” Talk about stigma! The ED Coding also limits the schools that Bryce can attend. Many schools are not certified to accept children with the ED coding although children with an ED coding may exhibit the same behaviors, symptoms, challenges, difficulties and learning differences as other disabled children. They may also need the same services.

Bryce has changed a lot over the past three years – a lot in part due to the services he has received, as well as due to maturity and medication. His emotional disability no longer seems to be the driving force behind the challenges he faces in school. So, although he gets an excellent education fully paid for by Montgomery County and is doing well, when asked the question, do I think that Bryce needs a full re-evaluation – clearly my answer is yes.

I know that Frost can write adequate goals for him and give him an education and the services that he needs. But I do not think that the tests that were given to Bryce three years ago are an accurate picture of Bryce and his abilities and learning differences currently. I am not convinced that Emotionally Disabled is the correct disability for Bryce at the present moment. His moods are mostly stable. He does not read, write or do math at grade level however. He clearly has a learning disability, but I do not think that at the current time it is his emotions that are keeping him from learning. It is something else.

Testing takes time and money. It is frustrating. It is not a perfect science. It might show something different.
So of course I want to go through with the testing. I want the time taken, the expense taken. I want to put Bryce through the tests. I want to fill out the parent questionnaire. I want to make sure that Bryce gets the right services, is in the right classroom and is taught using the appropriate methods and given the right accommodations.

As a parent of a child with special needs, that is my obligation – my job to fight for my child. To ask the questions, to request the testing, to ask for everything that is possible. It is legally required of the school and it is Bryce’s right to an education that is in his best interest.

Many parents do not want their child labeled as disabled or different or special needs. I encourage you – if your child is struggling or needs help – get them the help that is legally out there for them. It can truly help them grow into the person that they have the potential to become.

Maybe the test will not provide any additional answers – but I want to know that to. I owe that to my child.

What you don’t see on Facebook

Facebook. Instragram. Twitter. Snapchat. We have all gotten used to sharing our lives with our friends on Social Media. And it all looks so nice.

Everything looks great in those moments. You can even “filter” things so that they look even better. Some people are experts at how to take the best selfies.

I love how my family looks in those moments. Everyone is smiling. My family looks perfect.

A lot of these moments happen when we are on vacation. These “perfect” family moments.

When you have a child with anxiety, a mood disorder, developmental delays, etc., vacations are not always easy. When you have a child with a mental illness, things do not always go as planned. Don’t get me wrong, I love vacation and I love being on vacation with my family. I post a lot of great family photos from our vacations.

Here are some things from our vacations that did not make Facebook –

1. West Coast Road Trip – Last summer went took a road trip from Seattle to LA. We had a great time. This was a fabulous trip. And a long one. We did a lot, including Yosemite. Our pictures are amazing. The trip was amazing. We did not take any pictures of Bryce screaming at us throughout Yosemite, “I hate you all. I hate my family.” Our pictures do not show Bryce threatening to jump from a bridge at the waterfalls in Oregon. I can’t even tell you why he was screaming or why he got mad during any of the trip. I can tell you that Bryce loved Chinatown in San Francisco because he got a stuffed animal and he loved LA because he met my friend Ashley. That is all he remembers from our trip. That’s it. But that is ok. That is all he needs to remember.

2. Spring Break in the Shenandoah. Wait. That vacation never happened. We had to cancel it because Bryce was in the hospital. Instead we spent everyday driving back and forth to Towson to spend our one hour a day visiting our son (Did you know when your loved one is in a psychiatric hospital that you can only see them for one hour a day at a designated time?) There should have been pictures of staying in a cool cabin, hiking, etc. Nope. The pictures from our drives back and forth to Towson did not make Facebook.

3. Deep Creek SummerIMG_0384Here is a picture that did make Facebook. But right before this Bryce hit me and threatened to jump off the mountain. He was upset about something I cannot even remember and it escalated. We had to calm him down and make him safe. So, we did what any parents would do. We bought him ice cream. The pictures of him screaming and hitting me didn’t make Facebook. Neither did any pictures of parents telling us what we should have done instead. I cannot tell you the amount of times other people have tried to give me advice because they do not understand – I have learned to just politely nod or ignore them. Maybe I will take a picture next time. People also speak to Bryce directly – “Don’t talk to your mom like that, young man.” That isn’t really a good idea. When in a rage, Bryce tends to spout out some not so nice words.

4. Trip to Dutch Wonderland – One of our least thought out decisions was to stay at a quaint family farm in Pennsylvania near Dutch Wonderland. It was a family friendly farm that had tours, a trampoline, breakfast, etc. They had kittens. Bryce didn’t exactly know how to play with the kittens. He didn’t exactly know how to act at all. We basically left in the middle of the night. It’s a long story. It was a failed vacation. There are no pictures on Facebook.

5. Float Trip – Let’s just say one of my kids wound up in the water because the kids were fighting too much. That’s all I will say about that. Not on Facebook.

Basically I will just sum up and say that most of our vacations have good moments and bad. I didn’t even mention our cruise from last December. Bryce had an amazing time for 85% of the cruise. The first night, however Bryce had a meltdown and we had to restrain him. He was screaming and threatening to jump off the balcony.

I say all of this tongue in cheek and jokingly. But all of these stories are true and were terrible, scary moments. We got through them all and we managed to have great vacations. We show you the good and not the bad.

So if you are a parent of a child with mental illness or a disability, and you are struggling – Don’t worry. Relax. You might think everyone else is having more fun or having a “perfect” vacation, but just realize – they are only showing you their best moments.

We don’t know what goes on in other people’s lives. We only see the good and we all project that our lives are wonderful.

No one’s life is perfect. Some of us struggle more than others, but everyone has their struggles.

Life will not always be perfect, but it will be wonderful.

By the way, there are great places to go on vacation with kids that have special needs, especially all inclusive resorts. I will save that for another blog post!

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Our West Coast Road Trip – Bryce is smiling at Yosemite.  But this is before we are hiking. We drove to this spot! 

Mother’s Day – A Story of Hope

I talk about Bryce’s story. But I do not always tell my own. This is part of my story.

On Mother’s Day Weekend, I celebrate being a mom. I celebrate the two women who made me a mom, my children’s birth mothers. I celebrate my mother and my mother-in-law who are amazing mothers, and my sister who I love so much and is also a fabulous mother. I celebrate all of my friends who are mothers. As mothers we work hard, we do our best.Best-Happy-Mothers-Day-Images

My path to Motherhood was not as easy as some.

I always knew I wanted to be a mom. I could not wait to be a mom. I was working long days (and nights) as a corporate attorney. I could not wait until I could tell them that I was pregnant and would be going on maternity leave. But every month my “friend” would come. I was not pregnant. Again. And Again.

After months and months and months of trying, we knew we needed to do something. We got tested.

I am not going to go into all of the details, but we found out that we were not going to be able to have a baby naturally and we needed to do IVF if we wanted to have a baby. We went to a highly recommended specialist in Dallas who told Terry and me that we were young and healthy and there was no reason IVF should not work for us. I took all of the meds, did everything I was told. It was not easy. It was a miserable experience, but we did it.

Not pregnant. Lots of tears. Lots of money. Lots of pain. Failure.

We will try again. The doctor said that our embryos were very good so that was not the problem. At the time, I worked as a corporate attorney at one of the biggest law firms in the world. It was a high stress job. Maybe it was stress? I remember clearly that the managing partner at the time came in my office and suggested that I take a month off to concentrate on the IVF. Rest, he said. Don’t worry. We want you to take the time. We will still pay you.

What? A month off paid to try and get pregnant? Who does that? It was awesome.

Round two – this time we were told we had perfect embryos. PERFECT. They said. As I was leaving the embryologist said to me, “Congratulations on your twins.” I cried. REALLY?

The 10 days you wait. Those awful 10 days. I waited. I felt terrible.

NOT PREGNANT. I cried. I was a failure again. But she said I’d be pregnant. The doctor called.

You should probably think about not trying again. Maybe try a surrogate. I don’t think I can help you.” Failure. A huge failure. But they gave me time off. I am a woman. My job is to get pregnant. My other job gave me time to get pregnant. I have always succeeded at things. Why can’t I do this?

That was Sept. 8, 2001. I failed. My high-pressured job told me to take a month off and relax I get pregnant. I did not. I went back to work on Sept. 10, 2001 to face them as a failure.

The next day the world came crashing down. Literally. I watched the towers fall as my own personal world was crumbling. I was not going to have a child. I had let everyone down. I could not take it. Slowly, I began to crumble just as the towers fell.

My husband Terry worked for Southwest Airlines. I was worried that my husband was going to lose his job. I was worried there would be an another terrorist attack at any minute. My house was in a flight path. Every time a plane flew overhead I thought it was going to crash into my house. Planes flew by my office window. I thought everyone of them was going to crash into my office. I could not be in my house. I could not be in my office.

I could not sleep. I could not eat. I could not stay in my house.

I quit my job. I lost a lot of weight. I cried. I drank. I literally had a breakdown.

People told me I needed help. Terry was there for me but I know he was scared. My coworkers  were there for me. They told me I needed help. Terry told me I needed help. I knew I needed help. I found a therapist. I was diagnosed with PTSD. They said that the combination of the two events happening simultaneously was too much. There were other things too that contributed to it, but those were the triggering events.

It took time to recover. I started to sleep. I went back to work. Medicine helped get me on the right path. I decided to keep going on my path to have a baby.

I would adopt a baby. I was devastated when the doctor told me to give up, but I was not going to let him keep me down. I was devastated that I felt like a failure, but I was going to find the strength to keep going.

I made some calls. I walked into Hope Cottage, a local adoption agency, and from that day, it just felt right.

I have told Karen’s – Bryce’s birth mom’s – story of recovery and how I loved her when I first met her.  And I told you that I love her.  I love her for so many reasons – one of which is because she helped save me too. She made me a mother when I couldn’t be a mom. She allowed me to not be a failure.

I did not have a baby grow inside of me, but I did have a baby with the help of Karen. I did not give up, I made a choice and chose another way to be a mom. I needed help and she helped me with her choice as well.

I was suffering from PTSD after 9/11 and after failing to have a baby. But Karen and Bryce saved me.

You never know how things are going to go in your life. You never know what will happen. I thought I was not going to be a Mother. So on Mother’s Day I celebrate the fact that I am a Mother. I celebrate my Mother. And I celebrate the women who made me a Mother.

Don’t ever give up. Don’t let someone say something to you and let it make you change your dreams.

Thank you and Happy Mother’s Day.

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Mental Health Awareness Month

It is Mental Health Awareness Month. It is also Children’s Mental Health Awareness Week. Everything has a day or a week these days. It is also Lemonade Day. Really? Does lemonade need a day? Do we need awareness for Lemonade?ChYhsaQU8AAq2fy

We do need awareness for Mental Illness and especially Children’s Mental Health.

Did you know that 1 in 5 children deal with a mental illness? And out of those children, 1 in 5 of them will not receive any help, treatment or services. What happens to those children that do not get help?

• Half of the children will drop out of high school
•  They are twice as likely to start using illicit drugs or alcohol
•  They are more likely to end up in the juvenile justice system
•  Many attempt suicide

I do not think that anyone reading this said, “Oh, those are my hopes and dreams for my child.”

We all hope for children that grow up to be doctors, engineers and lawyers, to excel at sports. We want our kids to be popular. We hope our kids do not struggle, do not talk back to us. We hope that other parents compliment us on how well behaved our children are. We hope that our child is a Straight A student, on the honor roll, asked to prom, picked first in gym class (are they allowed to do that anymore?), asked out on a date (even though secretly that might be a fear), go to college, etc.

Parents often do not want to face the reality that their children are not “perfect.” But just because your child has an illness, does not mean they are going to be any less perfect than you hoped. They might just need some help, treatment, additional skills, or maybe a little extra support. They might be different than you might have envisioned but perfect in their own way.

If your child had a medical illness, you would not hesitate to seek treatment. You would not hope or pray they would grow out of it. You would not just assume they were lazy or badly behaved. You would seek out answers and help them. You would not tell your child who has cancer that they got cancer for attention. You would not tell your child who broke their leg that you aren’t taking them to get a cast because you don’t want others know about it. Yet because of the stigma associated with mental illness, and because of the lack of knowledge people have, people do not get help for their children when they might have a mental illness. This includes anxiety, ADHD, depression, bipolar disorder, autism and others.

Mental illness is an illness of the brain. Mental health problems can be hard to identify especially because some behaviors may just be typical development during certain ages of development. There are so many resources out there that can help you identify what is typical and when you need to seek help. The earlier you seek help, the better. Early intervention has been shown to have a major impact when it comes to children. My own experience with my son has shown this to be true.

It is not easy to come to terms with the fact that the perfect child you wanted may not be “perfect.” It is not easy as a parent to face the fact that your child might hurt emotionally, that that your child might be different. But if you get them help, they can cope. They can succeed.

Do not worry about your child being labeled because of services they might receive at school or in the community. You would put them in a cast if their leg is broken and would not worry about them being labeled as someone with a broken leg. Well, if their brain is broken or injured, do your best to get it fixed. Doesn’t that sound like a better option than drugs, jail, dropping out of school or suicide? I think so.

Feel free to contact me to talk about it. I am not a therapist or a doctor, but I am someone with experience.  For immediate assistance, call 1-800-422-0009.

When there are no Warning Signs

 

Suicide. That is a terrible word. One of the worst words for a parent to hear. As I was writing this, I received an email from NAMI about Suicide Prevention. There are tons of posts on social media about suicide prevention because reports just came out about suicide rates being at an all time high.

This post is different than most posts about suicide. This is about impulse suicide.

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Last February I got a call from Bryce’s school telling me I needed to come there. They did not tell me why. When I got to the school, they told me to come sit down. I knew something bad had happened. They told me I needed to get Bryce evaluated. Wait, I need to go to the ER? I was so confused and disoriented. Everything had been ok. Bryce was fine that morning. He was fine the day before.

“Bryce ran into oncoming traffic,” they told me. He actually waited for the cars to come and then screamed he wanted to kill himself and that they were going to need to call 911.

Luckily the cars saw him and stopped. The teachers and staff were able to stop the other cars and restrain Bryce and get him safely out of the street.

We went to the ER. They would not let Bryce go home. I asked what would happen if I tried to take him home. I was told that was not an option. The hospital psychiatrist actually kept using the word suicide attempt. It was so hard to hear. He had talked about wanting to die before, he always banged his head for long periods of time, but suicide attempt? That is not something that any parent wants to hear.

As a parent of a child diagnosed with a mental illness, losing my child this way is my WORST FEAR. Even just hearing Bryce say that he wants to kill himself is excruciatingly painful. If you have read any of my other posts, you know that Bryce is not currently in crisis. If you asked me today if Bryce is suicidal right now, I would tell you no. Not at all. If you asked him, he would say he is fine. That day in February, I would have told you Bryce was not suicidal either. He would not have met any warning signs.

But Bryce is impulsive. Bryce’s moods change rapidly and Bryce can get angry and upset and not even understand why he is angry and upset. If something triggers Bryce, his anger and sadness can quickly escalate. Even if he is reminded of his coping skills and given space, there are times when he misunderstands a situation or may be tired or hungry mixed in with a trigger and he can no longer control himself. This is not just true for Bryce. This is the case for so many other children like Bryce.

Many suicides are planned. People feel desperate like there is no other way. These can be prevented. You need to listen to people, take people seriously and look for the warning signs. This is important and crucial. We need to advocate for funding, for reducing stigma, for early intervention and resources.

But in many cases, suicide or suicide attempts are impulsive, unplanned acts that happen within five minutes of thinking about it for the first time. An article recently published in the Journal of Abnormal Psychology states thatSuicide is the second leading cause of death among adolescents, and impulsivity has emerged as a promising marker of risk.””  So what do we do about that?

When the incident happened last February I was devastated. I was scared. Bryce was scared. We were all scared. He acted impulsively. He could have died. Did he truly want to take his life or was he just angry and AT THAT MOMENT that was what his impulses told him to do? His flight reflex kicked in. I fear it will happen again. Just this Saturday, he uttered the words, “Get me a kitchen knife. I do not deserve to live. I want to die.” Luckily, I was right there and was able to calm him down within an hour or so. But what happens when I am not there?

Suicide prevention is important. We need to know the warning signs and what to look out for. But we also need to learn more about the underlying causes of impulsivity and the illnesses that result in our children acting this way. We need funding for more research for mental illness in general – the causes, medications and therapies.

For now, how do we prevent that from happening again? I do not have the answers, but this is why I am doing what I do. More research needs to be done. As the email I received from NAMI says, we need to advocate for funding, for answers, for the stigma to go away, for awareness.

We have to be vigilant. We have to learn triggers, work on coping skills, how to teach and manage these children, and make sure that behavioral programs in schools are adequate and appropriate.

If you’re thinking about committing suicide, please call 1-800-273-TALK in the U.S.To find a suicide helpline outside the U.S., visit IASP or Suicide.org.

**** Dedicated to Ashley who was not as lucky as me and to the amazing staff at The Frost School

 

To tell or not to Tell?

Inspired by the clients I work with who are always wondering if they should talk about their mental illness.

My son Cole is a competitive swimmer and we attend a lot of swim meets, swim practices,etc. When you attend these events, you meet a lot of other swim parents, and

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Bryce loves being in the ocean. Here he is with his brother and cousins.

 

typically the conversations result in questions about other children, including of course, “Does your other son swim?” A lot of swimmers are part of swim families, and all of the kids swim. Well, not so much in our family. I mean, Bryce swims. He loves the water. Bryce is sensory-seeking – meaning he craves stimulation. Swimming, taking baths, jumping in waves in the ocean – all of those things fully stimulate your entire body. So, yes, Bryce loves to swim, but he is not a “swimmer” like Cole.

Of course, when you answer, “No, he doesn’t swim,” the next questions is always, ‘what does he do?” It’s not rude or even nosy. It is just conversation and of course people think that when you have a son as into their sport as Cole your other son MUST also be into something. So, how do I answer? Sometimes I just say, well Bryce is a video game kid and not really a sports kid. But, I always think, do I need to explain more? Do I tell them that Bryce has tried to participate in sports but it is so difficult for him? Do I share with them that Bryce has special needs. How do I explain it? Do I go into detail, or leave it at “special needs?” Do I say, Bryce has behavioral issues? That isn’t really correct. Do I say, Bryce is diagnosed with mental illness? Or, do I go into details.

Bryce is diagnosed with Bipolar Disorder, ADHD, Sensory Processing Disorder, Anxiety, Executive Functioning Disorder and has developmental delays. He is probably somewhere on the Austism Spectrum. I mean sometimes I don’t even know what to say because the list is so long and the list can change.

Or, do I tell them, well we tried soccer when he was younger. But since Bryce didn’t understand how to play the game, got frustrated and had impulse control issues, he just ran into the other kids. We tried swimming. Bryce made it through two practices before he realized that you had to actually pay attention and swim back and forth in the lane over and over again. So that didn’t work. We tried diving. The description for diving said it was great for kids with ADHD. and it was at the same time as swim practice. Perfect, I thought. That was going really well until we wound up in the emergency room because Bryce got upset to the point where he wanted to kill himself (that is a whole other post). We recently tried an art class. And guess what? Bryce made it through half the class before he decided he didn’t want to do it. But, he calmly came and told me he wanted to leave. He didn’t scream, yell, call anyone names, hit anyone or throw anything. Success!!

I know I do not need to tell anyone that Bryce is diagnosed with a mental illness or that he has developmental delays. Yet, many times I do. Why? To explain why it is that he plays a lot video games? Is that me feeling a need to not feel guilty?. Probably a little. Is that our society expecting everyone these days to “do something.” Probably a little. It is also just me telling about Bryce. That is who he is. He is special. I also do it because I want to stand up against stigma. I want people to know that it is okay to talk about mental illness. That I am not afraid to talk about it. And, when I do talk about it, other people talk about it. Maybe other people will get help for their child or find services. Because we have had success for Bryce and that is because we do get him help.

So, what does Bryce do? He loves video games, drawing, animals, stuffed animals, jumping on the trampoline and swimming. He loves swimming.

Parents of Special Needs Kids? – What do you tell people about your child? Please leave a comment.

Thank you Congressman Murphy!

One person can make a difference!!

I hope to make a difference in the world, even if it is just a little difference. Today I actually did. 

The stigma that surrounds mental illness has long been something that I have been fighting to try and stop. That is one of the reasons I talk about our family’s story. One way to get rid of that stigma is to see the person, not the illness – and to do that you need to use people- first language. PeopleFirst Language  emphasizes the person, not the disability by putting the person first.  No one says, “ I am cancer, ” so you don’t say, “I am schizophrenic.” 

manintree
#mainintree

Earlier today I saw several posts on Facebook and other articles about the “Schizophrenic #Manintree.” A Facebook post was written by Tim Murphy, U.S. Representative from Pennsylvania’s 18th Congressional District, a champion for Mental Healthcare reform.  His post hoped to get people’s attention at the absurdity of the the arrest and disposition of Cody Lee Miller, a man who spent 24 hours atop  a Sequoia tree outside of Seattle.  Instead of getting this man psychiatric help, a judge ordered him to have “no unwanted contact” from the tree and pay $50,000 in bail. Murphy went on to state that people were up in arms about the tree but there was no concern about this man’s need medical needs.  He further states that Cody’s mom is trying desperately to help her son but “Congress is still stalling on his Helping Families In Mental Health Crisis Act, HR 2646.”

I completely support Congressman Murphy and this bill. I have advocated for this Bill. But I couldn’t get passed the first line of his Facebook post because all I saw was the stigmatizing statement of “Schizophrenic #Manintree.”  So, I commented on the Facebook Post (which has 9600 shares and 7900 likes) –

Everyone wants to get him help but you are calling him “schizophrenic man in tree”. That makes him not seem like a person. How about the “man with schizophrenia who was in the tree”

And guess what? My friend Nicole commented too.  She wanted to write the same thing.  I responded and said I was going to blog about it.  Five more people liked it. 18 minutes I went back to the post to get the exact wording to write this blog. And guess what?  The Facebook post now says this, “ “#ManinTree who has been diagnosed with paranoid schizophrenia and desperately needs psychiatric care”.

It worked.  How amazing is that? My one comment was noticed and it made a difference.

Congressman Murphy is making a difference.

Cody’s mother who is fighting to get him help is making a difference.

My friend Nicole is making a difference.

Everyone else that is commenting and reading this are making a difference.

One person can make a difference.

Keep it up everyone.

And remember, a person with mental illness, is a person with mental illness, not a mentally ill person.

Thank you.

The original post to Facebook from Congressman Murphy:

OrigManInTreePost