When you begin your journey toward parenthood you make wishes. You wish for things like a healthy pregnancy; the ability to be a good mom to a healthy and happy baby, that they grow up to be happy adults who will go to college, have a career, get married, and have kids of their own; and millions of other smaller, silly, happy dreams.
You don’t wish for your child to be ill or to have challenges that will follow him for the rest of his life. You don’t want to worry that he will never walk or talk or go to “regular” school or be able to live on his own. You have no desire to learn a new language filled with acronyms like PDD-NOS, ASD, and OCD. And you can honestly admit that you never in your wildest dreams would have wanted to become a social worker/speech therapist/occupational therapist/treatment advocate seemingly overnight.
Yet here I am 20 years later, still on the job because a child’s mental illness is not something you can cure for him, but you can help him manage it. Everyday.
I was lucky. I am part of a large family that has had everything thrown at them. I have cousins who have physical and mental challenges. My youngest brother deals with cerebral palsy. I have family members who are healthcare professionals from all disciplines that have helped with my son, Corey. And yet with all that help, there were times I felt so alone.
Corey was a sick baby. He was jaundiced at birth and then we dealt with projectile vomiting. Pediatricians treated his reflux but something else was still going on. By the time he was two Corey was screaming and crying for hours and I didn’t know why. I kept asking and badgering anyone who would listen. I had no internet to delve into for information. After changing from a pediatrician to a family practitioner who I had worked with at a local hospital, I finally had someone who believed me.
Lesson 1: Trust your gut. You know your child and you know when something is wrong with him. Just because someone says “no” doesn’t mean that you give up. Doctors are not gods. You have a voice – use it. My late stepfather, a cardiologist taught me that.
Corey’s new doctor sent me to DuPont Children’s hospital in Wilmington, DE to see a developmental pediatrician. I spilled my guts and tears about Corey. She calmly listened and then nodded and told me that I wasn’t crazy. She agreed there was something going on and she would help us find out what.
And so began our journey. I was given contact information for my local county health agency. A worker came to our home for an intake interview. She had the doctor’s notes but also wanted to know what our lives were like, including how Corey acted. The sudden crying and screaming jags, the need to build pyramids of his toys that I came to learn was a signal that he was agitated. The rocking to soothe himself and avoidance of touching unless he initiated it. He would come to us to cuddle but we could not just reach out and touch him, which made daily hygiene a struggle. Ironically, he sought out his brothers for roughhousing. We later found out through occupational therapy that he craved deep pressure because it centered him. A weighted lap pad was created for Corey and it helped to calm him. In fact, he would get the pad himself and go sit or lie down. Corey had this innate sense of self and what he needed.
I learned that I needed be a good note taker. In the evening I would journal Corey’s day. The notes were useful for everyone we came in contact with so they knew how to treat Corey. And by journaling I wasn’t scrambling to remember events, especially when Corey was having a bad day.
Corey’s diagnosis path was complicated. When we first met with the psychologist we started out with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), and then moved onto Autism Spectrum Disorder (ASD). At various times he was diagnosed with Oppositional Defiant Disorder (ODD), Obsessive-Compulsive Disorder (OCD), Generalized Anxiety and various combinations thereof. There were more alphabet letters on his evals than in a can of alphabet soup. It was hard because Corey did not present with simple symptoms. That was what they were learning about Autism. No one child was the same. Corey’s occupational therapist said he was the best case study she ever had. Everything she learned about Corey became useful in therapies for other kids. He was a pioneer of sorts.
We were fortunate to live in a school district that had great resources for kids with special needs. Corey attended Early Intervention preschool, and also received occupational therapy and speech therapy. His behavior specialist, Rachael, who should be cloned a million times, had full access to his class. We had a therapeutic support staff person come into our home to help with life skills and work with the family. We also had monthly meetings with a psychologist. It was both therapy for Corey and me. What was important to the team was that the entire family received support. Corey’s issues affected the whole family and the whole family was vital to Corey’s therapy. There were also short team meetings to discuss the next month’s plan and goals.
As Corey improved, services were reduced. We didn’t need someone coming to the house as often. By age five Corey had made enough progress that he was ready to attend general education kindergarten with some supports in place. At that time, only Rachael continued to come to our house or we would meet with her at the office. Part of the plan as he was entering kindergarten was to start him in community activities, like Boy Scouts and soccer. The meltdown frequency started to decline. He wasn’t hyper-reactive when we went out in public to places like the grocery store. We were given exercises – trips out in public and the goals we hoped to achieve. One goal was to be able to drop him off at scouts for the weekly meeting and not need to be there, meaning he was able to participate in activities without having an outburst. The leaders were very supportive and understood what we were working towards.
(In fact when Corey was a junior in high school, the troop leader was working on a leadership course. One of the requirements was teaching the troop about disabilities. Corey actually offered to talk about his. This was one of the first times he spoke in public about his differences. We did a demonstration of what it was like to be him. An older scout was blindfolded. We then had several scouts form a circle around that scout and each one was given a different phrase to say or sing over and over. We also had the blindfolded scout spin around slowly. For two minutes the scout was bombarded with stimulation. When time was up, the boys looked at Corey in shock. He just shrugged. After that the boys took on a caring demeanor towards him. Corey relaxed and felt safe and became even more engaged in activities.)
Lesson 2: You can make a difference in the way other people see your world.
We still had challenges. Not everyone was open to Corey but we found that those that weren’t were just opportunities for what he and I called “life lessons.” Teachers who didn’t quite get having a student like Corey became a lesson that someday you will have college professors or bosses that just don’t get you. And that’s okay. Just do your best and be happy and proud of yourself. Corey continued to do well in school. He loved scouts, he became an Eagle Scout when he was 18. Sports were sometimes a challenge. He loved soccer and was good at it, but the physical contact with other players was unsettling to him. He dropped that and took up the clarinet. He liked it and was good. He was asked to play bass clarinet, became really good at that and earned spots in honor bands and played all through high school.
But then Corey was introduced to the sport that continues to have an influence on his life even today. Corey’s father, Keith (my second husband) plays golf. He taught our other sons, DJ and Pat, to play when we first started dating. When Corey was nine, Keith started bringing him along when he took the older boys out. Two years later, Corey was hitting balls and showed interest and talent. Today he is on the men’s golf team at college and caddies at a local golf course. For the past two years, he has received the “J.Wood Platt Caddie Scholarship” a prestigious award in our area. Golf has given him friends, employment and self confidence.
Puberty is hard enough under “normal” circumstances. It wreaked havoc with Corey. It was in junior high school, sixth or seventh grade, when we noticed a change in Corey. Actually, it was Corey who noticed the change. To say I was surprised with what he told me earned understatement of that year.
He was twelve. We were in Walmart standing in the cashier line when he told me about these weird feelings he was having. He showed me a table with towels folded on it and said he wanted to make the piles all the same height, that it bothered him they were different. The same with the snow piles along the road. He also spoke of a “noise” that was constantly playing in his head. I tried not to panic and calmly asked how long it was going on. When he told me a while, I suggested that maybe we should call Rachael.
Rachael expressed her concern with what Corey had related. She suggested we call our doctor. Corey was hitting puberty and with his diagnosis of Aspergers, he dealt with generalized anxiety normally. It seems puberty may have caused an exacerbation of OCD behavior. Corey told Rachael of the difficulty he was having reading his lessons and about the non-stop noise in his head. We also started to notice he wasn’t sleeping well. Corey on no sleep was not good. You could see it in his eyes and his demeanor. Our family doctor talked with Rachael and we all agreed Corey needed to be on medication. He decided on Zoloft. It was prescribed for symptoms like Corey was having. The doctor put him on a mild dose to start. He balked at first, but we sat him down and explained about being on maintenance meds and how it could help.
And help it did. The noise diminished and he was sleeping. His grades picked up. Every morning during junior high I gave him his pill and I went to work. Once he started high school, Rachael suggested that we needed to start prepping him for college life. This meant taking his meds on his own and leaning other life skills such as how to do laundry, cook meals and manage his time.
This was when my withdrawal from his daily life started and it did not go well. You see, I had spent the first fourteen years of his life organizing appointments, therapies, extra-curricular activities and reinforcing his care plans. Now Rachael wanted me to step back from most of this, including giving him his meds. That was the hardest one for me. But he had been doing well and now we needed to trust him to take the pill daily.
Corey started out great. He would let me know when it was time for refills and he would have his check-ins with Rachael. He was working on getting his home and school responsibilities organized. He would ask for help but for the most part he was doing it on his own. Getting Corey to do his own laundry was a still a struggle but I blamed my husband, who would just gather everything up and do it. I think Keith thought he was helping. It was hard for Keith. He was so supportive and tried to help but I knew having strangers in and out of our home freaked him out. He would disappear when folks came. He said he wanted to stay out of the way. He struggled to understand the terminology and objectives. And sometimes I didn’t help. I was trying balance all of Corey’s care and be a mom to teen boys. Keith and I had only been married less than five years when we got the diagnosis and I became this crazy juggler tossing chainsaws. I sometimes would just plow ahead to get Corey well, at times running over Keith, DJ and Pat. There are still scars all around from that. I have seen families implode with a special needs child. Keith and I held strong but my relationships with DJ and Pat suffered. They still do a bit today. But I would do it all again if it meant getting Corey healthy. It may seem I am picking one child over the other but that child needed everything I could give him. So I continue to mend fences with my older sons and hope they forgive me. And now that DJ is a parent, I hope he understands.
Lesson 3: Sometimes it’s better to say I’m sorry than to ask permission. But sometimes saying you’re sorry may not be enough.
Our lives settled down again. Toward the end of sophomore year of high school, and I have no idea why I noticed, but I asked Corey if he was due for a refill. He tried to stall, saying he would get the pill bottle for me and it was another day until he finally produced it. It had been 45 days since it was filled. FORTY-FIVE DAYS!! How the hell had I not noticed? When I questioned him on it he gave the “I was feeling better and thought I could just stop” excuse. ARRRHGHGH!
Corey, Rachael and I sat down and discussed what was going on. This was not a medicine to just stop cold turkey. Rachael did an assessment on how he was doing. But more important was the trust issue. Corey wanted to be treated as an adult. Okay. But adulthood comes with responsibilities. His were to do his schoolwork, practice his musical instrument, practice golf and most importantly TAKE HIS MEDICINE. If Corey was feeling better, he should have come to us and asked about stopping his medicine and if we agreed, then he could be weaned off.
Well no sense crying over spilled milk. He was off his meds and seemed to be fine, so we would move forward. And he did. He finished high school successfully. He was a member of the National Honor Society, Tri-M Music Society (music honors), and his golf team finished second in the state where he received conference honors.
I previously wrote about Corey’s move to college in “They’ll always be our babies” for Your Zen Mama’s MAMA LOVE section. The first three years of college seemed fine. He changed schools, changed majors, and is now on the men’s golf team and living off campus. But this past summer, something was off.
See Lesson 1: Trust your gut.
Every summer Corey has to play in certain golf tournaments as part of his “tryout” for his spot on the team. I know I am his mom, but Corey plays well. This summer his scores weren’t what we expected them to be. His demeanor on the course was not relaxed like it normally was. He loves playing. He seemed to be putting a bit more pressure on himself regarding his place on the team, but a good summer of tournaments would take care of that. Uncharacteristically, though, his scores were up and down.
We asked him, and his golf teacher asked him if he was okay. He insisted he was and we had to trust him. But my gut started bothering me again. Unfortunately, now that he is an adult, I don’t have the same leverage over him that I had when he was younger. Corey and I have a good relationship, but there are times when I can only get so much out of him. He is entitled to his privacy. It was what we wanted for him. But, he is my baby and I never want him to suffer.
So I waited.
And just like that day in Walmart, he called me and told me something was wrong. He couldn’t concentrate in class, he was having trouble putting and making decisions on the golf course. The noise in his head that he complained about in junior high was back and he was having headaches. He thought maybe he needed to go back on his meds. I suggested he call Rachael. She remains a constant in his life. He can call her when things are bothering him that he may not be comfortable talking to me about. Corey was one of her first “kids” to go to college and she wants him to succeed. Keith and I drove up to school that night and brought him home. His doctor saw him the next morning, and we got him back on his meds. Corey and his doctor worked out a check-in schedule and this time I was not worried that he would take his medicine.
Now came the hard part. Who to tell and what to tell them.
Again, we are very fortunate that Corey attends a college that takes its students’ mental health very seriously. When he went back to school, he checked in with the wellness center to update his health records with the new medication. He has always been open about his Asperger’s. The staff was amazing and supportive and thanked him for telling them. They told him that too many times students hide their meds. There is no judging, they just want to be able to give students the best care and support possible while they are at school.
Next up, the Athletic Department. Corey is a student athlete subject to NCAA rules. They do random drug testing. The wellness center encouraged Corey to tell the trainers and assured him that they were bound by HIPPA (Health Insurance Portability and Accountability Act of 1996) not to disclose his health history without his permission. Corey spoke with the trainer, who also was very supportive and appreciative that he shared his information.
Now for the hard one, the coach. Corey and I, Corey and Rachael and Rachael and I spoke at length about what to do. Corey was on the team but he was struggling and you are judged by your scores. He had not played in the first two tournaments. If he did not get into the next tournament, he probably would not play in the conference tournament at the end of the fall season. Coach was an enigma. Someone, like Corey, who has trouble reading body language, had a hard time reading Coach. My husband and I found Coach to be a bit of an odd-duck. Corey did tell Coach about the Asperger’s when he first made the team last year, but we got a sense he didn’t quite get it so we dropped it. However with medication being involved, Corey decided he had to tell him, especially if he did go to a tournament. So Corey made the appointment and went to face Coach. Keith and I were a wreck not knowing how Coach would react and started to game-plan our support for Corey depending on the outcome of the meeting.
And the truth shall set you free.
Corey had a VERY good meeting with Coach. He was receptive and understanding, and asked Corey to consider checking in with him once a week to let him know how he was doing. They could talk about whatever Corey wanted. Coach then affirmed Corey’s place on the team. Nothing would change. He acknowledged Corey’s hard work at practice, his efforts in the weight room and his good attitude. He felt bad that Corey was struggling but happy he was taking care of it. He would do whatever was needed to support him. Corey just needed to continue to work hard. Corey asked about playing time. Coach told him he would be going to a one-day tournament (ironically it is at the course where he caddies) with the other players who had not gotten into a tournament. As for conference finals, we’ll see. They also have a spring season. Now it’s up to him to put in the work and get better. He continues to surprise us and he is one of the bravest people I know.
So much has been discussed about the state of mental health care in this country. It does need an overhaul. The country needs to adopt an attitude of support, not disdain for those dealing with it. Many college campuses have changed their policies and have reached out to encourage all those suffering to seek help.
I found when Corey was in school that by being open and encouraging discussions on acceptance, Corey had a better time through school. I know not all school districts are as open as mine was, but until you try to have a discussion, you will never know. You can be the change that helps your child (and potentially countless others) cope with their mental illness.
Silence is the enemy. the more schools build in supports to not only help our kids but to teach their classmates that their illness is just that, the more our kids feel safe and accepted. They may receive treatment and therapies but they are really no more different and unique than you. And with their friendship they are helping our kids get better, or at least get through. Corey has two best friends from high school who knew about his issues. They were classmates and teammates, and even though they are at three different colleges, they keep in touch and go visit each other. Those two young men were the best therapy Corey could have had. Every child with a challenge should be blessed with friends like Brandon and Nick.
What have I learned on this journey? Trust your gut. Use your voice. Document everything. Ask for copies of all reports and evaluations. If it requires your signature, get a copy of it – it is your right. Be open to thinking outside the box. Don’t be afraid to make mistakes. If you don’t understand what someone is explaining to you about your child, don’t be a bobblehead. This is your child they are talking about – ASK QUESTIONS. Be the best advocate you can be for your child.
How you can help a parent dealing with a child with a mental illness? Be understanding the next time you are in the grocery store and see a child having a meltdown – sensory overload is real and it can be crippling. As a parent, it was embarrassing having Corey meltdown in public, but I did what I could and having one less person looking down their nose at me meant a lot. A kind word or smile was everything. Support parents seeking change in school policy that makes the school day easier and more productive for special needs kids. When your child comes home from school talking about the “weird kid” in class, ask what makes him or her weird. Start a conversation about how our differences make us special. You just may be creating the next Brandon or Nick for a child that needs a good friend.
One person CAN make all the difference.
ABOUT KITTY/ Kitty is mom to DJ, Pat & Corey; Granny to Makayla, lives near Philadelphia with husband Keith & their dog. For fun she dabbles in fanfiction based on a certain handsome, tall, blond, shaggy LAPD Detective.