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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Mental Health, Stigma and Honesty

I previously wrote a blog post about what I say when people ask me about Bryce. It is a difficult question to answer. I am an advocate for mental health awareness and for my son. I am a stigma fighter. I help raise awareness for mental health, I advocate for mental health reform. I volunteer for the Crisis Text Line, for Sheppard Pratt Health Care Center. I worked with adults with severe mental illness. I write this blog. My goal is to make people know that it makes you strong, not weak, to get help and that mental illness is no different than any other illness.

I have never shied away from telling people that Bryce had a mental illness, but it has often been difficult to explain or find the right words to describe him. It is sometimes difficult because you worry about how others will react or what people know about mental illness. It has also been frustrating because it has been confusing as to exactly what Bryce’s diagnosis is. When I asked my husband Terry, he says that he tells people simply that Bryce “has serious mental health issues”. For me, it depends on my own mood what I say. Sometimes I say that Bryce has severe special needs. Sometimes I say that Bryce has severe mental illness or that he has Bipolar Disorder, ADHD, Anxiety and developmental delays. That is a mouthful.

Yesterday we received the results of his most recent psychological and educational tests. The results stated that Bryce meets criteria for a child with Autism. Finally. We have tried to get that diagnosis for years. The doctor who did the testing and analyzed the results stated that Bryce probably always met the criteria. As of yesterday, I can say that Bryce is a child with Autism, Depression and Anxiety. It is a clear diagnosis and easy to say. I can say it again. Bryce is a child with Autism, Depression and Anxiety.

Nothing has changed between the day before yesterday and yesterday. Bryce is the same child today that he was last week. He is the same 14 year old he was two weeks ago, but he has a new diagnosis, a new label, a new way that I can described him. I have been given a new way that I can explain his behaviors, his quirkiness, the reasoning behind why he is the way he is.

But, along with this new diagnosis and label, I also feel guilty. I like the new way I can describe Bryce. Why? It is easier, clearer and of course, comes with less stigma. Yet, I am the one that is outspoken and fights stigma. I am the one who says it is ok to say you live with a mental illness. Bryce still has a mental illness. He still struggles everyday. But now we get to say Autism. Not one mention of Bipolar Disorder in the new report.

I want the stigma of mental illness to go away. I want people to think the same way about someone with Bipolar Disorder that they do about someone with cancer. But, even for me, even for someone who is an advocate for mental illness, it is easier to tell someone, Bryce is a child with Autism than Bryce is a child with Bipolar Disorder. It is also easier for me because it is less scary. Less scary that Bryce might hurt himself. But in reality, he still has suicidal ideation, he is still anxious and he still struggles with school.

So, does it even matter? I don’t know. I wish that I did. I want to say that it is not true. I want to say I am better than any words or labels. I want to say I am stigma free. I thought I was. But maybe all of us have a little stigma inside of us. We can only do our best.soical-stigma

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.

What you don’t see on Facebook

Facebook. Instragram. Twitter. Snapchat. We have all gotten used to sharing our lives with our friends on Social Media. And it all looks so nice.

Everything looks great in those moments. You can even “filter” things so that they look even better. Some people are experts at how to take the best selfies.

I love how my family looks in those moments. Everyone is smiling. My family looks perfect.

A lot of these moments happen when we are on vacation. These “perfect” family moments.

When you have a child with anxiety, a mood disorder, developmental delays, etc., vacations are not always easy. When you have a child with a mental illness, things do not always go as planned. Don’t get me wrong, I love vacation and I love being on vacation with my family. I post a lot of great family photos from our vacations.

Here are some things from our vacations that did not make Facebook –

1. West Coast Road Trip – Last summer went took a road trip from Seattle to LA. We had a great time. This was a fabulous trip. And a long one. We did a lot, including Yosemite. Our pictures are amazing. The trip was amazing. We did not take any pictures of Bryce screaming at us throughout Yosemite, “I hate you all. I hate my family.” Our pictures do not show Bryce threatening to jump from a bridge at the waterfalls in Oregon. I can’t even tell you why he was screaming or why he got mad during any of the trip. I can tell you that Bryce loved Chinatown in San Francisco because he got a stuffed animal and he loved LA because he met my friend Ashley. That is all he remembers from our trip. That’s it. But that is ok. That is all he needs to remember.

2. Spring Break in the Shenandoah. Wait. That vacation never happened. We had to cancel it because Bryce was in the hospital. Instead we spent everyday driving back and forth to Towson to spend our one hour a day visiting our son (Did you know when your loved one is in a psychiatric hospital that you can only see them for one hour a day at a designated time?) There should have been pictures of staying in a cool cabin, hiking, etc. Nope. The pictures from our drives back and forth to Towson did not make Facebook.

3. Deep Creek SummerIMG_0384Here is a picture that did make Facebook. But right before this Bryce hit me and threatened to jump off the mountain. He was upset about something I cannot even remember and it escalated. We had to calm him down and make him safe. So, we did what any parents would do. We bought him ice cream. The pictures of him screaming and hitting me didn’t make Facebook. Neither did any pictures of parents telling us what we should have done instead. I cannot tell you the amount of times other people have tried to give me advice because they do not understand – I have learned to just politely nod or ignore them. Maybe I will take a picture next time. People also speak to Bryce directly – “Don’t talk to your mom like that, young man.” That isn’t really a good idea. When in a rage, Bryce tends to spout out some not so nice words.

4. Trip to Dutch Wonderland – One of our least thought out decisions was to stay at a quaint family farm in Pennsylvania near Dutch Wonderland. It was a family friendly farm that had tours, a trampoline, breakfast, etc. They had kittens. Bryce didn’t exactly know how to play with the kittens. He didn’t exactly know how to act at all. We basically left in the middle of the night. It’s a long story. It was a failed vacation. There are no pictures on Facebook.

5. Float Trip – Let’s just say one of my kids wound up in the water because the kids were fighting too much. That’s all I will say about that. Not on Facebook.

Basically I will just sum up and say that most of our vacations have good moments and bad. I didn’t even mention our cruise from last December. Bryce had an amazing time for 85% of the cruise. The first night, however Bryce had a meltdown and we had to restrain him. He was screaming and threatening to jump off the balcony.

I say all of this tongue in cheek and jokingly. But all of these stories are true and were terrible, scary moments. We got through them all and we managed to have great vacations. We show you the good and not the bad.

So if you are a parent of a child with mental illness or a disability, and you are struggling – Don’t worry. Relax. You might think everyone else is having more fun or having a “perfect” vacation, but just realize – they are only showing you their best moments.

We don’t know what goes on in other people’s lives. We only see the good and we all project that our lives are wonderful.

No one’s life is perfect. Some of us struggle more than others, but everyone has their struggles.

Life will not always be perfect, but it will be wonderful.

By the way, there are great places to go on vacation with kids that have special needs, especially all inclusive resorts. I will save that for another blog post!

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Our West Coast Road Trip – Bryce is smiling at Yosemite.  But this is before we are hiking. We drove to this spot! 

Mental Health Awareness Month

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?ChYhsaQU8AAq2fy

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.

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

 

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

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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

To tell or not to Tell?

Inspired by the clients I work with who are always wondering if they should talk about their mental illness.

My son Cole is a competitive swimmer and we attend a lot of swim meets, swim practices,etc. When you attend these events, you meet a lot of other swim parents, and

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Bryce loves being in the ocean. Here he is with his brother and cousins.

 

typically the conversations result in questions about other children, including of course, “Does your other son swim?” A lot of swimmers are part of swim families, and all of the kids swim. Well, not so much in our family. I mean, Bryce swims. He loves the water. Bryce is sensory-seeking – meaning he craves stimulation. Swimming, taking baths, jumping in waves in the ocean – all of those things fully stimulate your entire body. So, yes, Bryce loves to swim, but he is not a “swimmer” like Cole.

Of course, when you answer, “No, he doesn’t swim,” the next questions is always, ‘what does he do?” It’s not rude or even nosy. It is just conversation and of course people think that when you have a son as into their sport as Cole your other son MUST also be into something. So, how do I answer? Sometimes I just say, well Bryce is a video game kid and not really a sports kid. But, I always think, do I need to explain more? Do I tell them that Bryce has tried to participate in sports but it is so difficult for him? Do I share with them that Bryce has special needs. How do I explain it? Do I go into detail, or leave it at “special needs?” Do I say, Bryce has behavioral issues? That isn’t really correct. Do I say, Bryce is diagnosed with mental illness? Or, do I go into details.

Bryce is diagnosed with Bipolar Disorder, ADHD, Sensory Processing Disorder, Anxiety, Executive Functioning Disorder and has developmental delays. He is probably somewhere on the Austism Spectrum. I mean sometimes I don’t even know what to say because the list is so long and the list can change.

Or, do I tell them, well we tried soccer when he was younger. But since Bryce didn’t understand how to play the game, got frustrated and had impulse control issues, he just ran into the other kids. We tried swimming. Bryce made it through two practices before he realized that you had to actually pay attention and swim back and forth in the lane over and over again. So that didn’t work. We tried diving. The description for diving said it was great for kids with ADHD. and it was at the same time as swim practice. Perfect, I thought. That was going really well until we wound up in the emergency room because Bryce got upset to the point where he wanted to kill himself (that is a whole other post). We recently tried an art class. And guess what? Bryce made it through half the class before he decided he didn’t want to do it. But, he calmly came and told me he wanted to leave. He didn’t scream, yell, call anyone names, hit anyone or throw anything. Success!!

I know I do not need to tell anyone that Bryce is diagnosed with a mental illness or that he has developmental delays. Yet, many times I do. Why? To explain why it is that he plays a lot video games? Is that me feeling a need to not feel guilty?. Probably a little. Is that our society expecting everyone these days to “do something.” Probably a little. It is also just me telling about Bryce. That is who he is. He is special. I also do it because I want to stand up against stigma. I want people to know that it is okay to talk about mental illness. That I am not afraid to talk about it. And, when I do talk about it, other people talk about it. Maybe other people will get help for their child or find services. Because we have had success for Bryce and that is because we do get him help.

So, what does Bryce do? He loves video games, drawing, animals, stuffed animals, jumping on the trampoline and swimming. He loves swimming.

Parents of Special Needs Kids? – What do you tell people about your child? Please leave a comment.

What’s in a Name?

How did I pick the name for this blog? Bryce gets sad, anxious, depressed – especially at night which causes him to not want to go to sleep. I too had a lot of trouble sleeping when I was younger. (see, Bryce does take after me!). I remember that my mom used to tell me to “think of happy things” to help me fall asleep. I used to think, “right, like that is going to work.” Even though we all think we aren’t going to grow up and be just like our parents, I guess we do because that is the same thing I say to Bryce. When he is anxious, or scared, or sad, I hear it come out of my mouth, “Bryce, think of happy things.” That will relax you and help you fall asleep. Of course, he might tell me that nothing makes him happy, but of course there are lots of things that we can think of together. It might be hard at times to think of those things, especially for a kid or anyone who is dealing with severe depression, bipolar disorder or anxiety, but it can be done.

Everyone’s happy things are different, but being able to think of them is important and a great coping skill to teach children (and adults for that matter). Bryce’s happy things will change over time, as do all of ours. Right now Bryce thinks of the beach, our golden IMG_4148retriever Griffin, his favorite stuffed animals, his video games, jumping on the trampoline, and how much his family loves him. I hope these things always make him happy.

I do realize that when you or someone you love are truly depressed or anxious – it is hard to just think of happy things, and get happy. That telling someone to just be happy is not helpful. Sometimes, you just need to listen, be there, give someone a hug and tell them you understand. There are plenty of nights that I have done just that for Bryce. Those nights the most important thing to remember is to try not to cry, at least not in front of Bryce, but to just be strong for him. I can cry when he can’t see me. That is when I have to remember to think of my happy things.

Having a sad kid is hard. Probably one of the hardest things in the world. Hearing your child say that he wants to kill himself, that he doesn’t deserve to live – no one should ever have to deal with that. Luckily, thanks to great doctors, a great therapeutic day school, The Frost School (part of the Sheppard Pratt Health System), and Bryce learning these coping skills (He has come downstairs and said – I am thinking of my happy things, but I still can’t sleep), those truly sad days are less frequent for us now. I know there will be bumps in the road, but I can honestly tell others that there is hope out there. That things do get better.

How do you help your child or loved one think of their happy things more often? Here are some suggestions:

  • Make happy things flash cards. Take pictures of their happy things. Print them out and attach them together with a key ring. Make a little flip chart of them for easy reference.
  • Make a Happy Things box. Same idea, but put the pictures in a box. If you need to pick one Happy Thing, close your eyes and reach into the box.
  • Make a Happy Things Bulletin Board
  • Create a Photo Album or Scrapbook showing your child doing all his Happy Things

What other ideas do you have to help someone remember their Happy Things?  Leave a comment and let me know.  

What are your Happy Things?

Thanks for reading.

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Bryce, Cole and Griffin outside yesterday