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.
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.
I spent the past two days at on Capitol Hill attending the National Council for Behavioral Health’s Annual Public Policy Institute and Hill Day. Hill Day is an event that brings together behavioral health providers, administrators, board members, consumers and community members from all over the country. The first day we attended sessions and workshops on federal behavioral health policy. Yesterday we “stormed” Capitol Hill meeting with Congress to advocate for better resources for mental health and addictions.
I learned so much during these two days. I was inspired. I was able to tell my story.
We were told to tell our personal stories to our Congressmen. We were told that we could make a difference. I feel like I made a difference yesterday. I learned during these two days that by telling positive stories of hope – by showing up and telling true stories of how treatment programs work – you can show your legislators and their staff that the programs they fund can really help their constituents.
There were so many people walking around the halls of the Senate and Congressional office buildings. Each one of them had a badge on representing some organization or cause. Everyone thinks that the piece of legislation they are asking their legislator to support is the most important.
By telling our stories, our voices are powerful. I hope that at least one Representative, Senator or Hill Staffer that I met with will remember the story I told – Bryce’s story. It is a story that proves that with the right education programs and treatment, someone living with mental illness can live a stable life. I hope that when going through all of the Bills that he or she has to decide to co-sponsor or vote in favor of or against, maybe Bryce’s story will pop up and it just might make a difference.
I need it to make a difference. Not for me, or for Bryce. But for this country. What I have known, and what I learned even more these past two days, is that we as a country are facing a Mental Health Crisis. Linda Rosenberg, the President of the National Council told us that we have done great over the years raising awareness for Mental Health – but Awareness is not enough, we NEED ACTION. Suicide rates are on the rise. Deaths as a result of overdose are also on the rise. This is Not Acceptable.
Former US Congressman Patrick Kennedy spoke at Hill Day. Kennedy told us that the mental health crisis is affecting our life expectancy rate in America. This is Not Acceptable. He said that Congress needs to Go Big Before they Go Home when it comes to Mental Health legislation. We can not allow Congress to pass a bill that looks good on the surface, that makes Congress “feel good” because they addressed the issue, but in reality has no impact because it does not fund any new programs.
So what exactly did we do at Hill Day?
We asked our legislators to co-sponsor or support several different pieces of legislation. If they already supported it, we thanked them and asked them to try and get it moving to get it passed. Specifically, some of that legislation included:
The Mental Health First Aid Act (S. 711/H.R.1877) . Mental Health First Aid is a public education program that helps people identify, understand and respond to signs of mental illnesses and substance use conditions. When you take the class, you learn a five-step action plan to reach out to a person in crisis and connect them to a professional, peer or other help. This Bill would provide much needed funding to get people trained in Mental Health First Aid at low-cost.
The Mental Health in Schools Act The Mental Health in Schools Act(S. 1588/H.R. 1211) builds on a successful program known as Safe Schools/Healthy Schools. It would expand the availability of comprehensive, school-based mental health and substance use disorder services in communities across the country. It would place on-site qualified mental health and substance use professionals in schools across the county to provide behavioral health services for students at no charge.
Expand the Excellence in Mental Health Act. (S. 2525/H.R. 4567) The Excellence in Mental Health Act was created as part of the Protecting Access to Medicare Act of 2014. It was a two-year, 8-state initiative to expand Americans’ access to community-based mental health and addiction care. It lays the foundation for a transformation of our delivery system by setting standards for Certified Community Behavioral Health Clinics (CCBHCs) and establishing a Medicaid payment rate that supports the costs for these clinics. The expansion of the Act would allow all 24-states that are planning for these clinics to continue planning and creating these much needed service systems.
These bills increase services in schools, increase community-based services for those living with mental illness and provide funding to help identify those that need mental health services to provide early-intervention and care. These bills are not controversial. They are common sense.
While Hill Day was inspirational, educational and hopeful, it was also frustrating. Frustrating because although everyone we spoke to told us they agree with us, they understand us, and they listened to us, there is no guarantee anything will get passed.
I hope Congress can find the money to fund these bills. If we do not find the money to fund necessary services for mental health, we will find ourselves falling further into the mental health crisis, and that I know we can not afford.
We ALL have a story to tell.
I urge you to contact your Senators and Representatives and tell your story. Ask them to support one of these bills or other mental health legislation. You can read more about the bills here.
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!
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.
I want to write about a truly remarkable woman who means a lot to me – Karen, Bryce’s birthmother.
It makes sense to write about Karen. Without Karen, there is no Bryce and no story to tell. Without Karen, I would not have the life that I have. Karen is a big reason I am the person that I am today. And I like to think that I am part of the reason that Karen is the person that she is today as well.
When I met Karen, she had just given birth to Bryce and she was handcuffed to a hospital bed. She had just made me a mother and she was beautiful. She asked me to buy her a comb. That was all she wanted. Of course. I went down to the hospital gift shop and got her one. It was the least I could do. She gave me a son – I could give her a comb.
When Bryce was born, Karen was suffering from drug addiction and had been for years. She was also diagnosed with bipolar disorder. She had a completely different life than me. But she was a smart young woman. I could tell that when I met her. I could also tell that from the amazing letter she wrote to Bryce when he was born. In that letter she told Bryce about the difficult decision she made in choosing adoption, that she chose Terry and I to be his parents and that she loved him very much. They were words that any parent would want their son to hear. I could not have written a better letter if I tried.
Karen struggled with drug addiction for years. She was in and out of jail, hung out with a bad crowd and soon after giving birth to Bryce, lost her mother to a heart attack which just made things worse for her. But Karen did not give up. And I did not give up on her.
I cared so much for her for what she had given me, and I wanted to help her. Since we had an open adoption, I wanted to and was able to be in touch with her. Given her background, at first our contact was only through Hope Cottage, our adoption agency. I wished I could have done more for her. I wanted to take her in my arms and tell her how much I loved her and that anything she needed, I would give her. But I couldn’t do that. My responsibility was to Bryce, to do everything I could to take care of him. And at that time, Karen was using drugs and was in and out of jail. Having a close connection to her would not have been in the best interest of Bryce.
I wanted her to know I cared. She was Bryce’s birthmother. I called to check on her when she was in prison and found out I was on her visitor’s list. I had no idea she would put me on her list. It meant so much to me that she put me on her list, that I went and visited her in prison. I was like a fish out of water, but it was an incredible experience. She was so surprised to see me. I just needed to know how she was, and I needed her to know that I thought of her and loved her.
Karen and I stayed in touch. I would send letters to Hope Cottage, she asked for pictures of Bryce, and she wrote letters back.
Years later I found out Karen was clean. She tells me that one day she was in church and “the addiction just left her.” She says that when in jail, she voluntarily admitted herself into a rehabilitation program. She felt that she was only being “warehoused” in jail, and if she didn’t get help, there was no other hope.
When Karen was released, she held on to her Hope. She started attending Narcotics Anonymous meetings, got a sponsor and followed their step work. She did service work for others and kept going to church.
Karen has been clean for 7 years. She got a college degree, works full-time and is getting a Master’s in Addiction Counseling.
Karen is a true story of Recovery. It was not an easy road for her, and this does not begin to tell the details of it. But Recovery is possible.
Karen’s story is one of Hope. Mental illness and addiction can drag you down, but there is always a way back up. We must continue to advocate for funding for recovery programs as well as funding for mental health as the two often go hand in hand. Bryce’s birthmother is a true example of Strength and Recovery. I know that Strength and Hope have been passed on to Bryce.
Thank you Karen for allowing me to share part of your story. We love you. I know fate brought us together for so many reasons.