Our son, Cody, began presenting signs that something was “wrong” at a very young age. The first “red flag” went up when he was just eighteen months old. By the time he was two we were becoming more and more concerned, but as new parents we assumed that our “Terrible Twos” were just exceptionally terrible.
But the “Terrible Twos” turned into the “Horrible Threes” and the pre-school years were even worse!
Exhausted, we decided to enroll Cody in a pre-school program. As an only child, we thought that interaction with other kids would be a good idea. We found a reputable program and signed Cody up. We were thrilled.
But almost immediately, I began receiving phone calls.
“Cody is in trouble”
“Cody didn’t follow directions.”
“Cody was aggressive.”
“Cody wasn’t able to be still during story time.”
“Cody was written up again today”
“Parents are complaining about Cody”
“Cody can no longer attend our program.”
And so we tried another school.
And another after that.
We got kicked out of every one.
All I heard was how difficult Cody was and how I had no control over my child.
But they couldn’t control him either.
I began to internalize the criticism and before long I was convinced I was a terrible mom. All the other kids behaved. Why couldn’t I get it right?
My self esteem was shot.
I can only imagine how Cody must have felt.
I knew that Cody was a challenge. I lived with him. (Believe me, I knew!) But I needed respite and I needed help! If I couldn’t handle him and the professionals couldn’t handle him, what were we supposed to do?
Desperate for help and answers, we tried one more pre-school, at the local Baptist Church, and we were blessed with an incredible teacher named Ms. Pam.
Ms. Pam worked with Cody and she was willing to “think outside the box”. Instead of making Cody sit still during story time, she allowed Cody to play with legos or blocks. When she asked him to tell her about the story, he was able to recite the storybook word for word. Her system worked! Ms. Pam loved Cody and she recognized Cody as a precious child of God. Cody graduated from Ms. Pam’s class and he even participated in the end of the year program. We will never forget Ms. Pam.
The following year we enrolled Cody in a Pre-K special education program. When I went to pick Cody up the first day, I dreaded hearing what the teacher would say. Bracing myself for criticism, tears filled my eyes when the teacher told me that Cody was a helper and he had an excellent vocabulary. She only offered praise.
Through my tears, I looked at her curiously, waiting . . . and wondering . . .
But before I could ask my question, she answered it. She said, “You already know all of the bad things. I want you to know the good things.”
I still get choked up thinking about those words.
Twelve years and multiple hospitalizations later, Cody is now sixteen-years-old. He has a diagnosis of Bi-Polar Disorder and ADHD, he is oppositional and defiant and he has sensory processing issues. Cody is a sick kiddo, but he is also very smart, very mechanical, incredibly loving and kind, he is artistic, and he has a great sense of humor. We adore Cody.
And Cody suffers from mental illness.
Cody is currently getting his education at a residential treatment center in Utah. This is his second time to be placed in a residential setting. Sending our son to live somewhere else has been devastating, yet we have fought for these services. Cody is sick and Cody requires a higher level of care. The best news is that Cody is thriving in his new placement. We are thrilled!
Over the years, as we have navigated our nation’s failed mental health care system, and worked with our educators to help our son, I have learned some important lessons . Thankfully, I no longer hang my head in guilt and shame . . . In fact, I am proud to say I have learned to effectively advocate for my child. With the help of our school district, we have finally found some success.
Parents and Teachers, this is for you. As we enter into a new school year, I want to encourage you. You all play a significant role in the lives of children affected by brain disorders. Your partnership is critical to the success of the child. Here are a few of the most valuable lessons I have learned:
1. ADMIT THAT THERE IS A PROBLEM:
Parents, if you have a child with special needs of any kind, but especially if your child has Autism or Mental illness, the best thing you can do for your child is ADMIT that something is wrong. So many parents walk in such grief, guilt, and shame that they refuse to admit there’s a problem. By walking in denial you are hurting yourself but more importantly, you are hurting your child. There is no shame in having a mental illness. If your child had cancer, you would do everything you could to help them. Mental illness is no different. Don’t let it be different. If your child has a brain disorder, love them, grieve for them, and be honest about it. Help is hard to come by, but it is available. Admit that there is a problem and seek help.
2. PARTNER WITH YOUR TEACHER AND ADMINISTRATORS
Once you have determined and accepted there is a problem, your school administrators and teachers must become your best friends. Be kind to them. Encourage them. Talk openly with them about your child. Ask them how you can help them and ask for their advice. Work together. They are your team. You need them and they need you. Most importantly, your child needs you all. Work closely with your school.
3. REMEMBER YOU KNOW YOUR CHILD BEST
As parents we naturally put our trust in the “professionals” and the “experts”. We rely on them to know what is best for our children. But over the years I have discovered that even the most well intended professionals do not know my child as well as I do. Listen and heed their advice when it seems appropriate, but if something does not feel right or sound right, remember, you are an expert too! In fact, you are THE EXPERT when it comes to your child. Be kind and professional but speak up confidently and don’t be afraid to voice your opinions and concerns.
4. BE PATIENT
Working with the education and mental health care systems is a process. Mental illness is not treated like any other illness in our nation and as a result our school districts have become responsible. This is wrong, but for now, it is the system we have to work with. I sincerely believe that in most cases, school districts really do try to do what is best for the child. However, they have a process that they have to follow and there are a lot of hoops and red tape to jump through. Follow up with them, but be patient. Work with them, not against them. Earn their trust and let the system do its job. In the end, they have a responsibility to provide a free and appropriate education for your child. Stay on top of them, but be patient and kind. If you work with them, they will work harder for you.
5. SAY THANK YOU
Teaching is a thankless job. Teaching kids with special needs and mental illness takes thankless to a whole new level. Be sure to thank your teachers. Praise them when you see they’ve gone the extra mile, bring them a Starbucks to start their day, and let them know you appreciate them. A simple “thank you” will go a long way.
1. THANK YOU
Teachers and Administrators, you are overworked and underpaid. Your job is thankless and you feel like a babysitting service instead of professional educators. Your classrooms are overcrowded, un-air-conditioned, and at the end of the day you still have to go home and grade papers. I am thankful I am not a teacher. But…I am especially thankful that YOU ARE! You are important and valuable and while it may not always feel like it, You Are Appreciated . Thank You.
2. JOIN OUR TEAM
Teachers and Administrators, we need you! Our children with mental illness learn differently than other kids and their illness makes things very difficult at home. Caring for our children will require a team approach. We need you to be on our team. Some parents will need you to put the team together and they will need additional reassurance from you. Be gentle with us. In many cases we are living in 24/7 crisis. We are scared and ashamed, and we feel alone. We may make your life difficult sometimes, but it is only because we want to help our children and the system does not make that easy. We need you, but more importantly our children need you. You play a vital role in our children’s success. Please join our team!
3. YOU MAKE A DIFFERENCE, PLEASE KNOW THE DIFFERENCE
Teachers and Administrators, you are on the front lines with our kids and your help is critical when it comes to caring for our children with mental illness. Mental illness is real. Perhaps you know this, I hope you do, but I need to say it again anyway. Mental illness is real. It is not just a behavioral problem or something that the parents are doing wrong. It is an actual medical condition that requires medication, just like heart disease or diabetes. I cannot begin to tell you how often I have been berated for bad parenting when my child actually has a diagnosable mental illness. Your willingness to understand and know the difference between behavioral problems and actual mental illness is critical to our families. Please help us help our children. Be aware and know the difference. If you don’t know, then talk with us or ask your superiors to provide additional training.
4. LISTEN TO US
Teachers and Administrators, we recognize that you are the professionals and you are the ones with the degrees. We value your input and we trust you to help us help our children. But just as we respect you, we need you to respect us. We truly know our children better than anyone else. Our insights can be a huge help to you. Please listen and take our concerns seriously. Most parents are genuinely well intended. Let’s work together!
5. DON’T GIVE UP ON OUR KIDS
As you read in the stories above, two of the teachers who stand out most in my mind are two who gave Cody a chance. Kids who suffer from mental illness are difficult. Believe me, as parents we know! But our children with mental illness are important too. They are suffering and they deserve a chance. So even though your classroom is overcrowded and you’re tired from all the state testing, you have a gift of creativity and a love for seeing children, ALL children, learn. Don’t be afraid to think outside the box to find ways for our children to participate. And most importantly, focus on the positives. Give our kids praise. Give us praise! Your kindness and encouragement will go a long, long way.
(Image found on Pinterest)
PARENTS and TEACHERS
One last thing to consider is that some kids may simply require a higher level of care. We recognize that it is everyone’s desire to keep the child in the least restrictive environment and certainly the best scenario is for the child to remain at home. But in some cases, such as in our family, the child is simply too sick to live at home. We would never expect a child with cancer to be treated in the home, so why do we expect a child with mental illness to receive anything less than professional medical care? Parents and Teachers, please be willing to admit that some kids just need more help than the parents can provide. This is nothing to be ashamed of. It is not the fault of the parents, the child, or the school. The child has an illness. Let’s treat it that way.
Parents and Teachers, it’s the start of a new school year! Your willingness to work together and to encourage and support one another is crucial for every child’s success. When a child is suffering from mental illness, there are no easy answers, but together we can work better and smarter to ensure that every child has a chance.