Hill Day 2016 – It’s Personal

Tracy3 Comments

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.

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Sen. Cardin took the time to meet with us at Hill Day.  Sen. Cardin is a Co-Sponsor of the Mental Health in Schools Act

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.

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Patrick Kennedy speaking to Hill Day attendees before the advocacy meetings.

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.

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Parenting is Hard – Don’t Judge

Tracy3 Comments

I know most of my posts are about parenting a child with mental illness, but this is just about parenting. Parenting a child with special needs is really not all that different than just parenting, especially when it comes to parenting a pre-teen and a teenager.

Parenting is HARD. And to make it even harder, it seems that the rules for parenting change everyday, for what to feed your kids, to how much TV they can watch, to how much structure or down time they need. As a parent, you need to do what feels right for you. For that reason, we should not judge others choices.

As everyone knows, a 4-year old boy somehow got into a gorilla enclosure in the Cincinnati Zoo. That should not have happened. The Zoo will need to review all of its enclosures, as should other zoos across the county.Harambe

There is so much judgment online for the mother of the child that fell into the gorilla cage. This is a terrible tragedy. An accident. We have all taken our eyes off of our kids for an instant. We do not know all of the details of this situation. Maybe she wasn’t paying attention. Maybe it was longer than a few seconds. Things happen. Most of us have gotten distracted – especially in today’s world. The kid got away from her. It happens.

I agree that we need to watch our kids, especially in public places and dangerous places. We should be diligent about it. But, I think many people have turned their back for a second and their child ran off? I have. It is extremely scary. It causes panic, fear and lots of other emotions.

If you listen to the mom on the video – this mother stayed Calm, calling to her son and telling him she loved him. That was incredibly brave of her. Other people would have completely panicked in the situation, possibly causing the gorilla to act aggressively. We can commend her for that. We can learn from that. We all need to remember to stay calm as parents because when we panic, we are no good to anyone, especially our children.

As a parent, when times are hard – we must remain calm. We must remember to breath, to take a moment and think about what needs to be done. Ask for help if you need it. It is ok to ask for help.

Remember -Just do your best. Whatever your best is on any given day.do your best. whatever that best is on any given day. from naomi blake

Let’s try and support each other rather than beat each other down. There are enough people out there trying to do that

Thank you.

Dear Parent of a Child Diagnosed with a Mental Illness

Tracy6 Comments

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

Tracy13 Comments

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 – IMG_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! 

Mother’s Day – A Story of Hope

Tracy13 Comments

I talk about Bryce’s story. But I do not always tell my own. This is part of my story.

On Mother’s Day Weekend, I celebrate being a mom. I celebrate the two women who made me a mom, my children’s birth mothers. I celebrate my mother and my mother-in-law who are amazing mothers, and my sister who I love so much and is also a fabulous mother. I celebrate all of my friends who are mothers. As mothers we work hard, we do our best.Best-Happy-Mothers-Day-Images

My path to Motherhood was not as easy as some.

I always knew I wanted to be a mom. I could not wait to be a mom. I was working long days (and nights) as a corporate attorney. I could not wait until I could tell them that I was pregnant and would be going on maternity leave. But every month my “friend” would come. I was not pregnant. Again. And Again.

After months and months and months of trying, we knew we needed to do something. We got tested.

I am not going to go into all of the details, but we found out that we were not going to be able to have a baby naturally and we needed to do IVF if we wanted to have a baby. We went to a highly recommended specialist in Dallas who told Terry and me that we were young and healthy and there was no reason IVF should not work for us. I took all of the meds, did everything I was told. It was not easy. It was a miserable experience, but we did it.

Not pregnant. Lots of tears. Lots of money. Lots of pain. Failure.

We will try again. The doctor said that our embryos were very good so that was not the problem. At the time, I worked as a corporate attorney at one of the biggest law firms in the world. It was a high stress job. Maybe it was stress? I remember clearly that the managing partner at the time came in my office and suggested that I take a month off to concentrate on the IVF. Rest, he said. Don’t worry. We want you to take the time. We will still pay you.

What? A month off paid to try and get pregnant? Who does that? It was awesome.

Round two – this time we were told we had perfect embryos. PERFECT. They said. As I was leaving the embryologist said to me, “Congratulations on your twins.” I cried. REALLY?

The 10 days you wait. Those awful 10 days. I waited. I felt terrible.

NOT PREGNANT. I cried. I was a failure again. But she said I’d be pregnant. The doctor called.

“You should probably think about not trying again. Maybe try a surrogate. I don’t think I can help you.” Failure. A huge failure. But they gave me time off. I am a woman. My job is to get pregnant. My other job gave me time to get pregnant. I have always succeeded at things. Why can’t I do this?

That was Sept. 8, 2001. I failed. My high-pressured job told me to take a month off and relax I get pregnant. I did not. I went back to work on Sept. 10, 2001 to face them as a failure.

The next day the world came crashing down. Literally. I watched the towers fall as my own personal world was crumbling. I was not going to have a child. I had let everyone down. I could not take it. Slowly, I began to crumble just as the towers fell.

My husband Terry worked for Southwest Airlines. I was worried that my husband was going to lose his job. I was worried there would be an another terrorist attack at any minute. My house was in a flight path. Every time a plane flew overhead I thought it was going to crash into my house. Planes flew by my office window. I thought everyone of them was going to crash into my office. I could not be in my house. I could not be in my office.

I could not sleep. I could not eat. I could not stay in my house.

I quit my job. I lost a lot of weight. I cried. I drank. I literally had a breakdown.

People told me I needed help. Terry was there for me but I know he was scared. My coworkers  were there for me. They told me I needed help. Terry told me I needed help. I knew I needed help. I found a therapist. I was diagnosed with PTSD. They said that the combination of the two events happening simultaneously was too much. There were other things too that contributed to it, but those were the triggering events.

It took time to recover. I started to sleep. I went back to work. Medicine helped get me on the right path. I decided to keep going on my path to have a baby.

I would adopt a baby. I was devastated when the doctor told me to give up, but I was not going to let him keep me down. I was devastated that I felt like a failure, but I was going to find the strength to keep going.

I made some calls. I walked into Hope Cottage, a local adoption agency, and from that day, it just felt right.

I have told Karen’s – Bryce’s birth mom’s – story of recovery and how I loved her when I first met her.  And I told you that I love her.  I love her for so many reasons – one of which is because she helped save me too. She made me a mother when I couldn’t be a mom. She allowed me to not be a failure.

I did not have a baby grow inside of me, but I did have a baby with the help of Karen. I did not give up, I made a choice and chose another way to be a mom. I needed help and she helped me with her choice as well.

I was suffering from PTSD after 9/11 and after failing to have a baby. But Karen and Bryce saved me.

You never know how things are going to go in your life. You never know what will happen. I thought I was not going to be a Mother. So on Mother’s Day I celebrate the fact that I am a Mother. I celebrate my Mother. And I celebrate the women who made me a Mother.

Don’t ever give up. Don’t let someone say something to you and let it make you change your dreams.

Thank you and Happy Mother’s Day.

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Mental Health Awareness Month

Tracy3 Comments

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

Tracy8 Comments

 

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 that “Suicide 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

Tracy7 Comments

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

Karen’s Story – Hope and Recovery

Tracy28 Comments

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.

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Karen, Bryce and Tracy at the Hope Cottage Christmas Party.  Karen is still dealing with addiction at this time, but sees Bryce through the adoption agency

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.

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Strength and Hope – Karen and Bryce two years ago during a trip to Dallas

To tell or not to Tell?

Tracy19 Comments

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.