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.
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.
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 or someone you know is in crisis, text HELLO to 741741 to text with a trained Crisis Counselor 24/7.
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.
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.
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.
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.
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.
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.
I talk about Bryce’s story. But I do not always tell my own. This is part of my story.
On Mother’s Day Weekend, I celebrate being a mom. I celebrate the two women who made me a mom, my children’s birth mothers. I celebrate my mother and my mother-in-law who are amazing mothers, and my sister who I love so much and is also a fabulous mother. I celebrate all of my friends who are mothers. As mothers we work hard, we do our best.
My path to Motherhood was not as easy as some.
I always knew I wanted to be a mom. I could not wait to be a mom. I was working long days (and nights) as a corporate attorney. I could not wait until I could tell them that I was pregnant and would be going on maternity leave. But every month my “friend” would come. I was not pregnant. Again. And Again.
After months and months and months of trying, we knew we needed to do something. We got tested.
I am not going to go into all of the details, but we found out that we were not going to be able to have a baby naturally and we needed to do IVF if we wanted to have a baby. We went to a highly recommended specialist in Dallas who told Terry and me that we were young and healthy and there was no reason IVF should not work for us. I took all of the meds, did everything I was told. It was not easy. It was a miserable experience, but we did it.
Not pregnant. Lots of tears. Lots of money. Lots of pain. Failure.
We will try again. The doctor said that our embryos were very good so that was not the problem. At the time, I worked as a corporate attorney at one of the biggest law firms in the world. It was a high stress job. Maybe it was stress? I remember clearly that the managing partner at the time came in my office and suggested that I take a month off to concentrate on the IVF. Rest, he said. Don’t worry. We want you to take the time. We will still pay you.
What? A month off paid to try and get pregnant? Who does that? It was awesome.
Round two – this time we were told we had perfect embryos. PERFECT. They said. As I was leaving the embryologist said to me, “Congratulations on your twins.” I cried. REALLY?
The 10 days you wait. Those awful 10 days. I waited. I felt terrible.
NOT PREGNANT. I cried. I was a failure again. But she said I’d be pregnant. The doctor called.
“You should probably think about not trying again. Maybe try a surrogate. I don’t think I can help you.” Failure. A huge failure. But they gave me time off. I am a woman. My job is to get pregnant. My other job gave me time to get pregnant. I have always succeeded at things. Why can’t I do this?
That was Sept. 8, 2001. I failed. My high-pressured job told me to take a month off and relax I get pregnant. I did not. I went back to work on Sept. 10, 2001 to face them as a failure.
The next day the world came crashing down. Literally. I watched the towers fall as my own personal world was crumbling. I was not going to have a child. I had let everyone down. I could not take it. Slowly, I began to crumble just as the towers fell.
My husband Terry worked for Southwest Airlines. I was worried that my husband was going to lose his job. I was worried there would be an another terrorist attack at any minute. My house was in a flight path. Every time a plane flew overhead I thought it was going to crash into my house. Planes flew by my office window. I thought everyone of them was going to crash into my office. I could not be in my house. I could not be in my office.
I could not sleep. I could not eat. I could not stay in my house.
I quit my job. I lost a lot of weight. I cried. I drank. I literally had a breakdown.
People told me I needed help. Terry was there for me but I know he was scared. My coworkers were there for me. They told me I needed help. Terry told me I needed help. I knew I needed help. I found a therapist. I was diagnosed with PTSD. They said that the combination of the two events happening simultaneously was too much. There were other things too that contributed to it, but those were the triggering events.
It took time to recover. I started to sleep. I went back to work. Medicine helped get me on the right path. I decided to keep going on my path to have a baby.
I would adopt a baby. I was devastated when the doctor told me to give up, but I was not going to let him keep me down. I was devastated that I felt like a failure, but I was going to find the strength to keep going.
I made some calls. I walked into Hope Cottage, a local adoption agency, and from that day, it just felt right.
I have told Karen’s – Bryce’s birth mom’s – story of recovery and how I loved her when I first met her. And I told you that I love her. I love her for so many reasons – one of which is because she helped save me too. She made me a mother when I couldn’t be a mom. She allowed me to not be a failure.
I did not have a baby grow inside of me, but I did have a baby with the help of Karen. I did not give up, I made a choice and chose another way to be a mom. I needed help and she helped me with her choice as well.
I was suffering from PTSD after 9/11 and after failing to have a baby. But Karen and Bryce saved me.
You never know how things are going to go in your life. You never know what will happen. I thought I was not going to be a Mother. So on Mother’s Day I celebrate the fact that I am a Mother. I celebrate my Mother. And I celebrate the women who made me a Mother.
Don’t ever give up. Don’t let someone say something to you and let it make you change your dreams.
Thank you and Happy Mother’s Day.
It is Mental Health Awareness Month. It is also Children’s Mental Health Awareness Week. Everything has a day or a week these days. It is also Lemonade Day. Really? Does lemonade need a day? Do we need awareness for Lemonade?
We do need awareness for Mental Illness and especially Children’s Mental Health.
Did you know that 1 in 5 children deal with a mental illness? And out of those children, 1 in 5 of them will not receive any help, treatment or services. What happens to those children that do not get help?
• Half of the children will drop out of high school
• They are twice as likely to start using illicit drugs or alcohol
• They are more likely to end up in the juvenile justice system
• Many attempt suicide
I do not think that anyone reading this said, “Oh, those are my hopes and dreams for my child.”
We all hope for children that grow up to be doctors, engineers and lawyers, to excel at sports. We want our kids to be popular. We hope our kids do not struggle, do not talk back to us. We hope that other parents compliment us on how well behaved our children are. We hope that our child is a Straight A student, on the honor roll, asked to prom, picked first in gym class (are they allowed to do that anymore?), asked out on a date (even though secretly that might be a fear), go to college, etc.
Parents often do not want to face the reality that their children are not “perfect.” But just because your child has an illness, does not mean they are going to be any less perfect than you hoped. They might just need some help, treatment, additional skills, or maybe a little extra support. They might be different than you might have envisioned but perfect in their own way.
If your child had a medical illness, you would not hesitate to seek treatment. You would not hope or pray they would grow out of it. You would not just assume they were lazy or badly behaved. You would seek out answers and help them. You would not tell your child who has cancer that they got cancer for attention. You would not tell your child who broke their leg that you aren’t taking them to get a cast because you don’t want others know about it. Yet because of the stigma associated with mental illness, and because of the lack of knowledge people have, people do not get help for their children when they might have a mental illness. This includes anxiety, ADHD, depression, bipolar disorder, autism and others.
Mental illness is an illness of the brain. Mental health problems can be hard to identify especially because some behaviors may just be typical development during certain ages of development. There are so many resources out there that can help you identify what is typical and when you need to seek help. The earlier you seek help, the better. Early intervention has been shown to have a major impact when it comes to children. My own experience with my son has shown this to be true.
It is not easy to come to terms with the fact that the perfect child you wanted may not be “perfect.” It is not easy as a parent to face the fact that your child might hurt emotionally, that that your child might be different. But if you get them help, they can cope. They can succeed.
Do not worry about your child being labeled because of services they might receive at school or in the community. You would put them in a cast if their leg is broken and would not worry about them being labeled as someone with a broken leg. Well, if their brain is broken or injured, do your best to get it fixed. Doesn’t that sound like a better option than drugs, jail, dropping out of school or suicide? I think so.
Feel free to contact me to talk about it. I am not a therapist or a doctor, but I am someone with experience. For immediate assistance, call 1-800-422-0009.
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
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: