This post was featured on The Mighty. It brings back memories every time it is published, but it is important for others to see as well.
Are the Kids Listening?
This is Mental Health Awareness Month. In honor of that, I wanted to share my latest post from sheppardpratt.org.
Blog posts on Sheppard Pratt’s Thrive
I wanted to let my reader’s know that I am still writing, but most of my writing is now on behalf of Sheppard Pratt Health System, on their blog Thrive. Check it out. Lots of awesome information written by many people. Thanks for checking it out.
UPDATE: Sheppardpratt.org has been revised. The Blog posts now sit on News and Views. You can see the blog posts here.
Early Intervention and Prevention: IT MATTERS!
Many of you know my story. You know that Bryce is now doing well. He is in a full-time therapeutic school and gets the support that he needs. It took years to get Bryce at The Frost School. He struggled immensely in elementary school and it was a difficult road. We asked for an Individualized Education Program (IEP) as soon as he started kindergarten and were told that he did not qualify. We tried again in first grade and he was given a 504 plan which is not binding and does not give the same protections as an IEP. Bryce continued downhill – he was not completing schoolwork, he was suspended and restrained repeatedly and he was hospitalized numerous times. It was traumatic.
This summer I saw Bryce’s second grade teacher for the first time in years. We were chatting about how well Bryce is now doing. She told me, “The year I had Bryce was the hardest year I’ve ever taught.”
When his second grade teacher said those words to me it devastated me. She did not mean it to cause me pain though. She did not mean to suggest she didn’t want him as her student. She didn’t say it because Bryce was a difficult student. I mean – he was. But she meant it a different way. It was hard on her emotionally. She saw Bryce restrained over 10 times. She felt hopeless. When we did finally have a meeting to try and get Bryce an IEP she told the truth. She did not sugar coat anything. She told the county she spent over 60% of her time with Bryce. She told them that Bryce needed additional services, that he needed smaller class size and could not be safely maintained in the classroom. Yet, since Bryce did not even have an IEP at the time, the county determined that there was more they could try at his home school. They were not willing to fund full-time special education. Although early intervention and prevention would have benefited Bryce, the school system does not work that way. They did not yet see full failure and they believe in a least restrictive environment and maintaining children in their home schools.
Although Bryce was finally able to receive an IEP and a placement at a full-time therapeutic school in 4th grade, it should not have taken that long. The placement was recommended after Bryce spent an hour and a half banging his head on cement walls and breaking the door off of the quiet room at his school. It was finally determined then and only then that the public school could not adequately maintain him. It should never have gotten that far. There were warning signs and Bryce was not making progress in school. Bryce is in 8th grade and even though he is safe and doing well, he is years behind grade level. He struggles with every day tasks and may never catch up to his peers.
If he had gotten adequate support starting in kindergarten, could things have been different? We will never know. We tried. I had him in private therapy early on and I ASKED, BEGGED, PLEADED for services from the school but they were not provided. Why is it difficult to get our children the help they need? Why do our kids have to hit rock bottom, scream for help or hurt themselves before they are given appropriate placements?
I realize it is too costly to give support to everyone. However, early intervention and prevention matter. Research shows that early intervention works and can have long-term benefits. Providing support when the brain is still developing is crucial for children to ensure positive outcomes. Young people who struggle with mental health problems miss more school resulting in lower grades and educational outcomes than students with stable mental health. There is evidence that money can be saved in the long-run if screening procedures are in place to identify those that would benefit from extra support or special education services. That is because paying for long-term disability or hospitalization has significantly higher costs than paying for up-front interventions. However, governments and school systems are not set up to lay out money until there is a problem and need is proven. Once someone is already sick or struggling, costs for treatment skyrocket.
In addition to saving money, we can save children. Evidence shows that early intervention can improve educational outcomes and well as emotional well-being. Many people are afraid to get help for their mental health due to stigma. If teachers and school systems are trained to identify students early in a non-threatening, mainstreamed way similar to hearing and vision tests, it will become commonplace and normalized. Mental health matters as much as physical health and should be part of normal school screenings.
Having gone through the IEP process now, I have counseled many friends on what to do and what to ask for. It feels good to help others in crisis and I am happy to assist those in crisis or who need advice. I can tell you that it helps to have a lawyer or educational consultant but that can cost thousands of dollars. Many people with children that are struggling cannot afford that. We tried early on to get Bryce the help he deserved. We told the school in kindergarten of Bryce’s challenges and his diagnosis. They did nothing. It took years before they helped. It should not have to be that way.
As parents, educators, and advocates we must continue to stand up for children and ask for early intervention. We must ask for services, recommend more funding for programs and training in schools. We must make it the norm that all children get what they need. It should not be a fight, it should be a given. We owe it to our kids, our future and our communities.
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.
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.
World Suicide Prevention Day
Last night I was talking with friends and we wondered if there was as much depression and suicide when we were in college. There were many people who were depressed. There were suicides. You heard about it. But it was not talked about as much. Also, there was not the Internet. And maybe life was simpler. Who knows.
What we do know if that Suicide rates are at an all time high. They should not be. There are so many resources out there now. People are talking about it. People are learning that it is ok to seek help, that depression and anxiety are illnesses. So, why are so many people still struggling? Why do many people still think that their only option is to end their life?
As a society, we must change this. We must strive to teach people that there are so many options out there to help make the pain stop that do not involve death. It is normal and understandable to want the pain to go away. But there are countless ways to make that pain stop. The same treatment may not work for everyone – medicine might work for some, therapy may work for others, a simple coping skill like drawing or breathing tactics might work for others. A combination of all three might be the key. Depression is a terrible way to feel, to live, to struggle. But there are treatments. If you feel physically ill, you go see your doctor. If you break your leg, you go to the ER or the orthopedist. It needs to be as simple that if you feel so down that you want to end your life, you seek help in the same way.
In order to accomplish this, we need funding, we need awareness. We need people to realize that feeling depressed, sad, anxious is ok and does not mean you are weak or a failure. It means you are human and you need help. And that is ok and normal to ask for it.
Please help me in spreading this message. Please make it ok for those struggling to know that it is ok to feel sad, to feel lost – but that by asking for help – they can be found, they can find hope and they can have a future that is fulfilling and satisfying.
If you are someone you know is in Crisis, text 741741 to reach a trained Crisis Counselor.
Bedtime and Bipolar Disorder
I love bedtime for me. I love crawling into my bed, putting my head down on my pillow and shutting out the world. I do not have any trouble falling asleep. I have learned to take some deep breaths, think of happy things and drift off to blissful sleep.
But night time for Bryce and as a parent can be the Worst time of the day. It always has been. And I started thinking – is it like that for others? I googled it just now “Bipolar and Night time” and it is amazing how many other people say that they can hold it together all day, but when it gets quiet and you are alone – Boom – that anxiety and depression just take hold and kick into overdrive.
Terry and I have experienced this for years with Bryce. I can remember getting anxious that it was almost bedtime. Bedtime has been a sense of tension for as long as I can remember. There were a lot of times when Terry and I would play “Rock, Paper, Scissors” to see who would have to put the kids to bed.
First Bryce had night terrors. Night terrors were scary because we did not know what they were, but as new parents we did what every parent did – call the pediatrician. Thank goodness for those nurse helplines that give you answers to everything from what do I do for a stuffy nose to what is this rash on my baby’s tush? We learned that night terrors are like nightmares on steroids, that your baby will seem awake when he is not and there is not much you can do but make sure that he does not hurt himself. Scary for sure, but ok, we got through that.
Then Bryce refused to sleep in his bed. He would sometimes sleep in the corner of his room or under the vanity in the bathroom. We could not figure out why. He just felt safer there.
Although Bryce grew out of these behaviors, the nights did not become any less stressful. We of course dealt with all of the typical behaviors – not wanting to go the bed, being afraid of the dark and monsters and wanting to sleep in our room. I know a lot of people have these problem, even parents whose kids do not have any type of diagnosis.
What is it about nighttime? There are endless strategies on getting your kids to go to sleep, teaching them to not be afraid of the dark, etc. There are also different theories on whether or not you should let your kids sleep with you, if you should stay in their room, etc. Everyone has to do what is right for them.
But while we had those typical behaviors to deal with, as Bryce got older, even on his good days, night time could be difficult. This is when he would ask the hard questions, when he would get depressed, when we would realize that even though he may be doing well, he really has a lot of sadness and confusion running through his brain.
Often, our days end like this –
“Mom, can I talk to you?,” He will ask coming out of his room even after we put him to bed. “I feel sad. My life isn’t worth living.”
“Am I weird? I think I am weird.”
“What will happen to me after you die? Will I be homeless? Who will take care of me?”
“Why was I born like this?”
“I am hearing voices. They are telling me to run away.”
All of these questions come at night. After we have put him to bed. When it is quiet. When the thoughts just go through his head.
So while night time is hard for everyone, “Can I have another drink of water”, “Just 5 more minutes”, “can you leave the light on” – our nights sometimes break my heart because I hear words that no mother ever wants to hear.
Of course, one might argue these are just stalling techniques and Bryce does not mean any of this because he is just saying it to get attention and more time at bedtime. Just like anyone asking for a glass of water. We wonder that all of the time? Why does this always happen at bedtime? Should we give these questions any validation? Should we worry? Although there are days when this happens earlier, it mostly happens at night. Why doesn’t he ask these questions or tell us these things earlier in the day? Is he just making it up?
I don’t think he is. I think he desperately wants to go to sleep and he can’t. He is a teenager and wants to sleep as much as possible, but he just can’t fall asleep.
Nighttime is quiet. Bryce is alone with his thoughts and he has been keeping it together all day. Once he is alone and it is quiet, it is harder to “keep it together” and stay positive. There is nothing else to focus on, to take his mind off of his tough feelings. He does not have his other coping mechanisms – video games, playing outside, crafts, etc.
Additionally, Bryce has a hard time falling asleep. Bipolar disorder interferes with a person’s circadian rhythm, the basic sleep-wake patterns in the brain that respond to changing light and dark as well as changing seasons. Since it is hard for him to get to sleep, he spends times laying in his bed not sleeping. This allows for various thoughts to creep into his head. Additionally, if his sleep patterns are disturbed, his moods can easily change causing depression or mania.
We have tried so many things – read a book, playing music, mindful meditations, Melatonin. On the worst nights, we do not have a lot of success with any of these, and sometimes have to give in and let him sleep on our floor or just wait him out until he falls asleep. He still sleeps with the light on. Some nights he does go right to bed. We never know what type of night it will be. We just have to keep consoling him, talking to him and hoping that the coping skills and discussions continue to work.
We try and maintain a routine as well. While sleep is important for everyone, it is extremely important for kids and adults like Bryce. All routines are. We continue to try everything we can. We do our best, just like we try and do everyday.
Thanks for reading.
Hill Day 2016 – It’s Personal
I spent the past two days at on Capitol Hill attending the National Council for Behavioral Health’s Annual Public Policy Institute and Hill Day. Hill Day is an event that brings together behavioral health providers, administrators, board members, consumers and community members from all over the country. The first day we attended sessions and workshops on federal behavioral health policy. Yesterday we “stormed” Capitol Hill meeting with Congress to advocate for better resources for mental health and addictions.
I learned so much during these two days. I was inspired. I was able to tell my story.
We were told to tell our personal stories to our Congressmen. We were told that we could make a difference. I feel like I made a difference yesterday. I learned during these two days that by telling positive stories of hope – by showing up and telling true stories of how treatment programs work – you can show your legislators and their staff that the programs they fund can really help their constituents.
There were so many people walking around the halls of the Senate and Congressional office buildings. Each one of them had a badge on representing some organization or cause. Everyone thinks that the piece of legislation they are asking their legislator to support is the most important.
By telling our stories, our voices are powerful. I hope that at least one Representative, Senator or Hill Staffer that I met with will remember the story I told – Bryce’s story. It is a story that proves that with the right education programs and treatment, someone living with mental illness can live a stable life. I hope that when going through all of the Bills that he or she has to decide to co-sponsor or vote in favor of or against, maybe Bryce’s story will pop up and it just might make a difference.
I need it to make a difference. Not for me, or for Bryce. But for this country. What I have known, and what I learned even more these past two days, is that we as a country are facing a Mental Health Crisis. Linda Rosenberg, the President of the National Council told us that we have done great over the years raising awareness for Mental Health – but Awareness is not enough, we NEED ACTION. Suicide rates are on the rise. Deaths as a result of overdose are also on the rise. This is Not Acceptable.
Former US Congressman Patrick Kennedy spoke at Hill Day. Kennedy told us that the mental health crisis is affecting our life expectancy rate in America. This is Not Acceptable. He said that Congress needs to Go Big Before they Go Home when it comes to Mental Health legislation. We can not allow Congress to pass a bill that looks good on the surface, that makes Congress “feel good” because they addressed the issue, but in reality has no impact because it does not fund any new programs.
So what exactly did we do at Hill Day?
We asked our legislators to co-sponsor or support several different pieces of legislation. If they already supported it, we thanked them and asked them to try and get it moving to get it passed. Specifically, some of that legislation included:
The Mental Health First Aid Act (S. 711/H.R.1877) . Mental Health First Aid is a public education program that helps people identify, understand and respond to signs of mental illnesses and substance use conditions. When you take the class, you learn a five-step action plan to reach out to a person in crisis and connect them to a professional, peer or other help. This Bill would provide much needed funding to get people trained in Mental Health First Aid at low-cost.
The Mental Health in Schools Act The Mental Health in Schools Act(S. 1588/H.R. 1211) builds on a successful program known as Safe Schools/Healthy Schools. It would expand the availability of comprehensive, school-based mental health and substance use disorder services in communities across the country. It would place on-site qualified mental health and substance use professionals in schools across the county to provide behavioral health services for students at no charge.
Expand the Excellence in Mental Health Act. (S. 2525/H.R. 4567) The Excellence in Mental Health Act was created as part of the Protecting Access to Medicare Act of 2014. It was a two-year, 8-state initiative to expand Americans’ access to community-based mental health and addiction care. It lays the foundation for a transformation of our delivery system by setting standards for Certified Community Behavioral Health Clinics (CCBHCs) and establishing a Medicaid payment rate that supports the costs for these clinics. The expansion of the Act would allow all 24-states that are planning for these clinics to continue planning and creating these much needed service systems.
These bills increase services in schools, increase community-based services for those living with mental illness and provide funding to help identify those that need mental health services to provide early-intervention and care. These bills are not controversial. They are common sense.
While Hill Day was inspirational, educational and hopeful, it was also frustrating. Frustrating because although everyone we spoke to told us they agree with us, they understand us, and they listened to us, there is no guarantee anything will get passed.
I hope Congress can find the money to fund these bills. If we do not find the money to fund necessary services for mental health, we will find ourselves falling further into the mental health crisis, and that I know we can not afford.
We ALL have a story to tell.
I urge you to contact your Senators and Representatives and tell your story. Ask them to support one of these bills or other mental health legislation. You can read more about the bills here.
Parenting is Hard – Don’t Judge
I know most of my posts are about parenting a child with mental illness, but this is just about parenting. Parenting a child with special needs is really not all that different than just parenting, especially when it comes to parenting a pre-teen and a teenager.
Parenting is HARD. And to make it even harder, it seems that the rules for parenting change everyday, for what to feed your kids, to how much TV they can watch, to how much structure or down time they need. As a parent, you need to do what feels right for you. For that reason, we should not judge others choices.
As everyone knows, a 4-year old boy somehow got into a gorilla enclosure in the Cincinnati Zoo. That should not have happened. The Zoo will need to review all of its enclosures, as should other zoos across the county.
There is so much judgment online for the mother of the child that fell into the gorilla cage. This is a terrible tragedy. An accident. We have all taken our eyes off of our kids for an instant. We do not know all of the details of this situation. Maybe she wasn’t paying attention. Maybe it was longer than a few seconds. Things happen. Most of us have gotten distracted – especially in today’s world. The kid got away from her. It happens.
I agree that we need to watch our kids, especially in public places and dangerous places. We should be diligent about it. But, I think many people have turned their back for a second and their child ran off? I have. It is extremely scary. It causes panic, fear and lots of other emotions.
If you listen to the mom on the video – this mother stayed Calm, calling to her son and telling him she loved him. That was incredibly brave of her. Other people would have completely panicked in the situation, possibly causing the gorilla to act aggressively. We can commend her for that. We can learn from that. We all need to remember to stay calm as parents because when we panic, we are no good to anyone, especially our children.
As a parent, when times are hard – we must remain calm. We must remember to breath, to take a moment and think about what needs to be done. Ask for help if you need it. It is ok to ask for help.
Remember -Just do your best. Whatever your best is on any given day.
Let’s try and support each other rather than beat each other down. There are enough people out there trying to do that
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.
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 that “Suicide 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