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.
What your kids will tell me but they won’t tell you
I just took my 500th conversation as a Crisis Counselor with Crisis Text Line. Crisis Text Line is free, 24/7 support for those in crisis. People of all ages text in for support. The topics that arise cover everything and many of those that text in are teens struggling with life. Volunteering for Crisis Text Line is amazing – it is an incredible experience.
As a Crisis Counselor, I learned to separate my own feelings and experiences when chatting with texters and helping them through their crises. Crisis Text Line provides amazing training to potential Crisis Counselors and I learned so much by going through it. But as a parent, it is also difficult to interact with these young people in crisis.
As parents, we do our best to make sure that our children are happy and safe. We want them to know they can come to us with their problems. We want open communication, we want to protect them for as long as we can and we want them to trust us with whatever is bothering them.
But often our kids are scared to tell us how they are really feeling. They worry about how their parents will react. As a Crisis Counselor I get to hear the from texters anonymously and confidentiality in a safe space. It is incredible how teenagers open up about how they feel through text. I get to hear from teens that are struggling – that are sad and depressed and feel that there is no hope. I get to hear from teens that are scared because they binged and purged for the first time and are not sure if that means they have an eating disorder. I hear from those that are afraid because they sent inappropriate photos to someone and are terrified. I hear from teens that cut and want to stop but do not know how.
But mostly during these open and honest chats what is surprising is how often these teenagers reveal that they are scared or worried to tell their parents that they are struggling, having thoughts of suicide or are dealing with self-harm. It is heartbreaking.
It hurts that so many respond saying their parents will get angry if they knew they were depressed. Angry? Yes. That is what they say. So many of these texters think their parents will be angry at them because they are depressed or feeling suicidal. It is devastating to hear that kids do not think their parents care, won’t help or will get angry at them for their feelings.
What it shows it that our children are scared. Our kids need us even if they say they do not. Our children need guidance and someone to watch over them even if they say they need space. I want all parents to know that they need to be compassionate and empathize with their children. That they need to tell their children it is safe to talk to them if they are hurting. That it is ok.
It is awesome to know that through their phones people can reach out for help. I wish that we could connect parents and their kids through Crisis Text Line but we cannot. It does not work that way. The way we can reach out children is by listening to them and letting them know we are there for them.
As Crisis Counselors, we are there for the texters. We are there to listen, to help and be there for the people in crisis. It feels good to help. But as Crisis Counselors, we can only do so much. As parents, we must be there always, unconditionally and no matter what. We need our kids to know that.
If you want to volunteer for Crisis Text Line, visit Crisis Text Line for more information or Contact Me to find out how AMAZING it is.
If you or someone you know is in crisis, text HELLO to 741741 to text with a trained Crisis Counselor 24/7.
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.
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.
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.
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.
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.