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.

 

IEP Review – To Ask or Not to Ask

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

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

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

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

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

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

Or can I?

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

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

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

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

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

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

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

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