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. 

website_school_masthead_frost
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.

early_intervention_is_key_postcard-r9678f58642a744cdbd7e2766b08a2269_vgbaq_8byvr_324

Advertisements

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.   IMG_0173

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.  

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.    

bat-mitzvah
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.

 

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.

IMG_4648 (1)
Sen. Cardin took the time to meet with us at Hill Day.  Sen. Cardin is a Co-Sponsor of the Mental Health in Schools Act

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.

IMG_4638
Patrick Kennedy speaking to Hill Day attendees before the advocacy meetings.

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.Harambe

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.do your best. whatever that best is on any given day. from naomi blake

Let’s try and support each other rather than beat each other down. There are enough people out there trying to do that

Thank you.

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.

The Other Child

Since my blog focuses mostly on Bryce, I was asked if I struggle to make sure my other son doesn’t feel left out. It is an interesting question because I actually more often worry if Bryce feels left out because I think we pay a lot of attention to Cole. I try and pay attention to both of my kids.

What I think is an important question is how Bryce’s illness affects Cole. Mental illness

IMG_0173 (1)
Cole spending quality time with Terry on vacation

affects a whole family for a wide variety of reasons. Luckily, our family is strong and I think has become strong in spite of or at times because of what we have been through.

As for Cole, when we were interviewed for the Sheppard Pratt Heal magazine in 2014, I asked Cole how Bryce’s illness affected him. He said, “it effected me emotionally when he went to the hospital because I did not have a brother at home to play with. I felt lonely.”

When Cole talks about when Bryce was in the hospital, those were the times when our family was in crisis. Things were bad for a long time. When Bryce was younger and truly unstable, he was violent- not towards Cole, but towards himself and towards me as his mother. Bryce had no impulse control, no frustration tolerance, and he could not handle his moods. Anything could trigger him and we never knew what was coming. He would be fine one minute, and then he would explode. These outbursts would result in physical attacks, objects being thrown, and Bryce wanting to hurt himself – banging his head against the wall, trying to jump from the balcony, running around the neighborhood trying to get hit by cars, and so on.

As a parent, my job was to keep my kids safe. Bryce was so unpredictable that was hard to do for him. I also had to worry about Cole’s safety – emotionally and physically. I did not want Bryce’s behavior and illness to affect him negatively. I needed to have a safety plan. When things were at their worst, I usually had another adult home with me. I hired someone to be here with me during the hours that the kids were home from school but Terry was at work. If there were times when we were alone and Bryce was having a tantrum, I had a code word that Cole knew. Cole knew to lock himself in the basement or go to a friends house.

There were times Cole would get upset that we were giving more attention to Bryce or that Bryce did not get a consequence. This is common in families with children with special needs. I actually think this is common in a lot of families. Bryce does not handle consequences well, especially when in crisis. We would explain to Cole that life for Bryce is not easy and so while it might seem unfair that he isn’t getting the same types of punishments as Cole or that we are having to spend time dealing with a situation, life is not always fair for Bryce either.

We always made sure we explained things to Cole in ways and with words that he could understand. For example, when Bryce had to go to the hospital, we’d explain to Cole that Bryce’s brain was sick.

While life might not be easy for Bryce, it is not always easy to live with Bryce either. And it does take up a lot of time and attention. For this reason, we would make sure that Cole got his special attention as well – special trips with Terry, special time with Mom. He deserved it. Family vacations were always hectic, including a Spring Break trip that got canceled because Bryce was in the hospital.

For now, our crisis has passed and Bryce is stable. Cole seems to have come through crisis pretty well. He is thriving. Cole is strong, kindhearted and caring. I hope it continues.

If you have a child with special needs and other children as well, I have these tips

1. Have a safety plan – If your child is known to be violent, make sure your other children know what to do to be safe. This can mean locking themselves in a room, calling someone, leaving the house and going to a neighbors or anything else reasonable and age appropriate that you come up with. You need to make sure that they know when to act on the safety plan and that they feel safe. I strongly recommend having an aide. The person does not have to be trained to deal with special needs children, they just need to be there for your other child or to help you when needed.

2. Spend special time with the child not in crisis – A child with special needs takes up a lot of time and energy, especially when that child is in crisis. Make sure you plan some alone time if possible with your other children. This could be a special night out, but it can also be as simple as reading a book at night or cooking a favorite meal.

3. Explain in simple terms why you “parent” each child differently – Many times children with special needs do not respond to traditional consequences and this can be hard for other children to understand and comes across as unfair. Explain to your other children in age appropriate terms why you are parenting differently, that each child is special in their own way and your other child is not just “getting away with it.”

4. Allow the child to talk to someone – Don’t think that just because someone doesn’t have special needs or a mental illness they don’t need to talk to a therapist or other professional. If there is violence or a crisis going on in your house, it might be a good idea for your child to speak to a professional.

For additional help and resources, check out these links:

Supporting Children with Special-Needs Siblings

The Other Kid