I wanted to let my reader’s know that I am still writing, but most of my writing is now on behalf of Sheppard Pratt Health System, on their blog Thrive. Check it out. Lots of awesome information written by many people. Thanks for checking it out.
UPDATE: Sheppardpratt.org has been revised. The Blog posts now sit on News and Views. You can see the blog posts here.
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.
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.
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 Summer – Here 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!
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 retriever 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.
I just read a review of the latest Lisa Scottoline book entitled “Most Wanted” – one of those books with a sensational storyline. This one has an infertile couple who finally gets pregnant thanks to a sperm donor but then finds out that their hand-selected, “perfect” donor might actually be a serial killer. Oh no! Now What? Will their precious baby inherit those “awful genes”? The parents to be are heartbroken. Apparently, causing therm and the reviewer in The Washington Post, Carol Memmott to ask questions such as, “What would you do – abort the baby?” and, “Could you love the baby knowing the biological father is a killer?” As I am reading the review, I am thinking to myself, “Am I really reading this?” This is their baby! They will love and raise the baby. Is there any other choice? Is this really a story for a book?
I am shocked by all of this because I adopted a baby whose “genes” were not perfect. So what?
My son’s birth mother and father were not serial killers. But they were diagnosed with mental illness. They used drugs. I knew all of this going in and of course I still loved my baby. I remember driving to the hospital to see our son after he was born. My husband and I realized we had not asked our social worker if he was healthy or not when she called. We said, “Oh well. I guess we will find out when we get there. He is our son now.” That baby is now 13 and I could not imagine not having him in my life. Bryce does have his challenges and life with Bryce has not always been easy, but there is nothing that I would change about any of the choices that we made.
When you have a baby of your own DNA, you do not know what will happen to the baby. Anything can happen. You love the baby. You raise the baby. It is no different if your baby has someone’s else’s genes. I often forget that my children were not born from my belly but from my heart. I’m just a mom like everyone else.