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. 

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Bryce feeling good at The Frost School

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.

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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.

 

Dear Parent of a Child Diagnosed with a Mental Illness

Dear Parent of a child who was just diagnosed with a mental illness,

I know how you are feeling. I remember when I first got my son’s official diagnosis – ADHD and Mood Disorder – NOS. There were other words. I remember it said Bryce would not be able to attend kindergarten without medication. I was sad, scared and worried. I am sure you are feeling all of these emotions and others.IMG_0173

Your expectations for your child may change, but this is not the end of the world. No matter what diagnosis your child was given, nothing about your child has changed. You still have the same child who you love, laugh with and cry with. Your child will still make you smile and still piss you off a lot.

Hearing or Reading the words – whatever they are – Depression, Bipolar Disorder, ADHD, etc. is hard, but they are just words. Do not worry so much about the exact diagnosis. It can change. It will change. Bryce’s has changed several times. It will probably change again. Unfortunately, mental illness is not an exact science.

Having been through this, I can offer some advice. Hopefully you find something here that’s helpful.

  • Find professionals that you like. If you are not comfortable with the psychiatrist, social worker or therapist you are using, change. You have every right to do that. Ask for recommendations from people you know and trust. Each time you change, you tell your story again so it can be tiring, but if it is to find a good fit, it is worth it.
  • Ask for help at your child’s school. Ask the school for an evaluation so your child can get accommodations – a 504 plan or an Individual Education Plan (IEP). Even if you do not think your child needs help academically, there may come a time where they need breaks, social skills support or other accommodations. They deserve this. They may also qualify for OT, Speech Therapy, etc. There are so many resources out there that you may not be aware of. If you can afford it, hire an Educational Consultant. You will get more services quicker because the school systems will know you mean business.
  • Understand the diagnosis, but do not worry so much about it. Make sure that the professionals working with you are treating the behaviors and symptoms – the impulses, the depression, the hyperactivity, psychosis, anger, etc. The diagnosis may matter, however, for certain services and resources. For example, in some circumstances. if you get an autism diagnosis, there may be more resources available to your child.
  • Research all you can. Find out what programs are offered in your area for support, therapy, social skills, etc. For example, are there any organizations that offer after-school activities for children with special needs.
  • Join a support group. If you want to talk to other parents going through the same thing, look for a support group in your area. Most NAMI chapters offer one. NAMI also offers classes that teach the basics of supporting a family member with a mental illness. If you join an online support group, DO NOT listen to everyone on the Internet. Everyone’s situation is different and some people only want to complain. Find what helps you, take breaks when it seems tough, and find the support that is helpful to you.
  • Take care of yourself. Don’t forget to take care of yourself. Self care is crucial in order to be a good parent.
  • Try not to worry and think too much about the future. This is incredibly hard to do, but you have to try and take things day by day. Sometimes even hour by hour. Things will change. A few years ago, I was told to prepare for the fact that my son would most likely have to live in a Residential Treatment Center. He was that unstable. He had five hospitalizations, including one that lasted for 45 days. I was not wanting to accept that. I worked hard to get him into a Therapeutic Day School. We changed his medications. We changed his behavior plan. We worked on his self-esteem. It took time, but we worked hard to make things better.  Things have changed – the diagnosis – now it is Bipolar, PDD, Anxiety, ADHD. He has sensory processing disorder as well and language delays.images

    But with all of those words, Bryce is also doing better. He is now mostly stable, has been stable for a few years and is doing well. There are bumps in the road, but that is ok. Right now my son has a friend from school over and they are going to the Trampoline place tonight, together. Typical teenage Friday night behavior.

So, what do I tell you as a parent? There is hope. There will be ups and downs.

Just do your best, whatever that best is on any given day. That is what I was told, and that is what I pass on to you.

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