Chapter 21 – ADHD

Dear Judge,

As I sat in my car reading the letter that, as a parent, I never dreamed of getting, I felt my hands start to tremble and my eyes tear up. I couldn’t figure out if I was angry, sad or just exhausted, but I was definitely shocked. Malachi had been attending the same home day care since he was only 8-weeks-old, and the provider assured me over and over again that the behavior he was displaying was “typical boy.” Even when I would raise my eyebrow and repeat, “You’ve actually seen another child act like this?” She would take a deep breath, look at me like I was overreacting, and say, “Oh Stephanie, I have seen it all.” So, as I was reading the letter, focusing on the words, “he is becoming a threat to both me and the other children around him,” I felt betrayed, confused, scared, and lost as to where I should turn next. She wasn’t “officially” kicking him out of her program yet, but she indicated that she would require a developmental evaluation, and that when incidents occurred, I would be called to pick him up immediately. Malachi was just 2-years-old when I read those words that sent us on a three-year journey to find answers.

When we started the long road to find out what was “wrong” with our son and get help, I found myself completely overwhelmed. Not only did I have to deal with all of our DCFS requirements, Bio-visits, teenage daughters, and my job, I found myself having to advocate for my son and jump through hoops to get answers. When he turned two-years-old I had to put aside most of my journaling because I just didn’t have the time or energy to devote to it anymore. Because I still have some Type-A personality traits and wanted to make sure I didn’t miss anything, I did keep a timeline of everything that happened in regards to all of our visits, conversations and requirements.

I will have two more letters for you and they are structured differently than my previous memoir accounts, because they are intertwined and I have to piece them together to make sense. Today I am going jump ahead in our story to touch on how hard it can be to get assistance from the state. If Malachi was legally my son when he was two-years-old, I would have made an appointment, took him in and focused on whatever I had to do to get it figured out. However, when your hands are tied in so many ways, it makes it a little harder to control the situation.

“Our ADHD Journey”

Malachi was always quick-tempered and would go from 0 to 10 in a hot second, literally from the time we brought him home. He was strong in so many ways, holding his head up to peer at me when he lay on my chest at just a couple of weeks old. He would eat, and within an hour he was hangry again, screaming and turning all kinds of shades of red. I remember being able to put my girls in a swing or a baby seat and do some chores, even if they cried, but I would finish what I was doing and then pick them up. Malachi was so much harder than that, and his crying was so intense that it was like he was in pain, so letting him cry was torture on all of us (and maybe the neighbors from time to time). He was only content to be laying still when he was witnessing chaos. Seriously, the more noise the better. I assumed that this was due to the fact that it was probably always noisy and a hostile environment when he was in the womb. As I mentioned previously, he was not a good sleeper. When he was being held, his body would randomly stiffen like he was flexing all of his muscles at once, and he would stay that way for minutes at a time. He reached all of his physical and cognitive milestones either early or on time. Every time I would take him for a DCFS-required developmental exam I would mention my concerns and every time I was dismissed. I also told his case worker about how difficult he could be every month at our home visits, and she would just give me sad puppy eyes that I perceived as, “So sorry for you, but not my problem.”

The bigger Malachi got, the bigger the tantrums got, and it didn’t take much to set him off. In fact, frequently I would have no idea what the trigger was. He would just start screaming and thrashing his body around. They happened mostly at home, and we would just hold him and wait it out while being careful that he didn’t clock one of us in the nose. We learned early on that he wasn’t going to be easy in public and didn’t take him out unless it was absolutely necessary, and/or we were mentally ready to deal with the ramifications, the disapproving stares and stress.

When he turned a year old, we tried “time out,” to no avail. He originally sat there for a few seconds but it didn’t last and it didn’t matter how many times I returned him back to his designated spot, “Super Nanny style,” he would not comply. It was not uncommon for it to take two hours to facilitate a one-minute time out. Same thing at bed time, sometimes it would take up to three hours, not exaggerating, to get him to go to bed. I followed all of the parenting dos and don’ts (i.e. bedtime routine, books, down-time, songs, back rubbing, etc.), I took advice from anyone who would offer it, but nothing worked. It was a little easier before he started climbing out of the crib, but once he was in a big-boy bed it was pure torture. Night after night of the same thing, and in the end, the only way he would go to sleep was if I was next to him. Even then, it would take him an hour or more to fall asleep. Naps were the same way, it was as if he could not calm his brain down regardless of how tired he was.

After I sent her the letter from the day care provider, my case worker set up a developmental appointment with DCFS at the babysitter’s request. The department appointment was the same as always, and Malachi was his charming self the entire time, smiling, laughing and flirting with the worker. Not one sign of any problem presented during our hour together. The official report said “recommend thorough developmental assessment based on foster-mother’s statements.” When my case worker informed me that she had put me on a 9-month waiting list for Lurie Children’s Hospital for an evaluation I assumed that she would continue to try other places; but she just accepted that as final answer. I did not. I realized very quickly that making that appointment was going to be an uphill battle. I made at least a dozen calls that first day and not one of them took Malachi’s state medical card or the waiting list was just as long as Lurie and an hour drive away.

Before he turned three-years-old his tantrums were getting more aggressive and frequent. He was so strong and would throw things, pull down book shelves, turn over every toy bin in his room, and hit and kick when anything didn’t go his way. Because he wouldn’t stay in time out at home or at day care we started to use the high-chair to contain him while he calmed himself, but he would get so aggressive, he would rock it back and forth until it tipped over. If we placed the high chair close to a wall so that he couldn’t rock it, he would use the wall to push off and get the same end result.

We had to move Malachi to a new daycare center, KinderCare, just before his third birthday. He seemed to do well with the change for a period of time. There were definitely some rough moments, particularly at nap time, but he seemed to do much better… for a short time. Five months after enrolling at KinderCare his tantrums started to escalate again. I went back to the phone and tried to get in somewhere else while we waited for the Lurie appointment, but I ran into the same walls that I faced the first time. After discussing with Daryl, we decided that we would just pay out of pocket for an examination with a pediatric psychologist and see where that took us, but we hit yet another obstacle. Several of the places I called would not see him because of his age, even though I was sure there was something wrong, it felt as if there was nowhere to turn. My case worker just kept telling me to wait until I could get him into Lurie. When I started to get frequent calls to pick him up from the daycare because they could not control his behavior I complained and insisted that our private foster agency make some calls on our behalf and find someone to help. I knew that Justin and Jay both had therapy through the state and the therapist even went to their home, but again, I was told that Malachi was too young for that and my grievance fell on deaf ears.

I finally got the name of a doctor from a friend and he agreed to see us, even though we were under the age he normally dealt with. He met with us one time and didn’t try to engage Malachi at all. He asked me several questions and had me fill out an extensive questionnaire. He reviewed my timeline, the extent of the tantrums and the babysitter documentation. Then that doctor diagnosed him with DMDD (Dysfunction Mood Dysregulation Disorder), formerly called “pediatric bipolar disorder.” He recommended that I put my three-year-old son on a medicine called Tenex. When I asked him if we could try some other options first, like occupational therapy, he dismissed me, saying, “Why wouldn’t you do both?” After researching the medicine, we were uncomfortable because studies were fairly new and not recommending for children under the age of six. He also recommended melatonin for his sleep issues, but when we looked that up it also had negative long-term effects and we just didn’t know enough to pull the trigger. When things did not improve and we were still on the waiting list for Lurie, I reached out to our case worker about the medication. She indicated that we did not have the authority to take him to the doctor that we took him to, and we definitely could not give him the medication without the Lurie evaluation and approval from the agency doctor and supervisor.

At this point I was being called to pick up Malachi early from KinderCare at least twice per week, sometimes just an hour after I dropped him off. One time, I was called before I even got home from dropping him off and when I arrived back at the facility, he was standing on top of a play table shaking and screaming with one of the teachers standing just close enough so that he wouldn’t fall. As I approached him, he held his hands out to me and grabbed on like he used to when he was in a violent fit with Bio-Mom. He squeezed me so tight that it was uncomfortable, and as I sat with him, rubbing his back, he started to calm. That’s typically how the episodes end, with him sobbing into my arms as his body starts to unravel from the tense state, but it had to be when he was ready. If I tried to approach him before he was ready I was met with more aggression.

We tried everything to get him to stay at school and comply, but nothing worked. We took toys away and reminded him that if he stayed there he would get all of his privileges. On the days we had to pick him up he would have no television time. We had a sticker chart and tried to entice him with positive reinforcement, but in the end he would say, “I don’t want my pwivwiges.” It was as if it didn’t matter what the emotion was that he was experiencing, if it was escalated in any way, he couldn’t handle it.

It was March of 2015 when we finally got the call from Lurie Hospital. He was three-years-old and we had been “getting by” for over a year using techniques I found on line to try and curb the behavior. We had two appointments with therapists at Lurie; not psychiatrists, but therapists. Not once in either of his visits did he display any of the issues that we reported. The therapists would even try to set Malachi up for disappointment to see how he reacted, but his response was appropriate each time. I told them how he had started to develop some anxiety and fears. I would spend nights on the couch with him crying and heaving because he thought bugs were in his throat and crawling on his body. He developed a sensitivity to loud noises and said his tummy hurt when he was afraid of something. His episodes would start with a low growl with his head down, and as you approached him to find out what was wrong, the growl would grow in intensity and he would tense his entire body, fists clenched and shaking. That’s when the aggression would start. Sometimes we would wake up to him standing next to the bed with that growl and that’s how we would start our day, with objects flying through the air. We would have to fight him to his bedroom to contain the mess from the tornado that was about to happen. I also mentioned his obsession with trains to the therapist, as I was unsure if this was abnormal too. I have heard of children who loved trains, but this kid took it to the extreme. He knew the different kinds of trains, the names of all of the mechanical parts, which ones were faster, and what noises they all made. Trains were a big part of our daily lives. The only thing he would sit still for was watching real-life footage of trains on YouTube. He would watch them for hours if we let him. She mentioned that often times someone with ADHD will hyper focus on one thing and that could be what we were witnessing.

Because of our accounts and the letters outlining his behavior from the daycare providers, the therapists at Lurie recommended OT (occupational therapy) for DMDD with possible ADHD. We left the appointment armed with several recommendations for the referred service, but again, we ran into extremely long waiting lists, and denials due to his insurance. We were placed on the waiting list for Loyola OT and were told that it would be at least six months. The professionals we met with at Lurie did say that we could safely use the melatonin for sleep issues so we decided to give it a try.

The night we introduced the melatonin was as if God himself opened up the skies and said, “A gift for you,” and for the first time in three years, Malachi went to sleep without any issue. We took the 3 mg gummy form that it came in, brushed his teeth, sang a song, read a book and he went to sleep. I almost didn’t believe it and had forgotten what it was like to have a normal night. I literally didn’t know what to do with myself and was almost giddy. To me, it was truly a miracle. The fact that he was getting more sleep started to improve his behavior a little and I felt hope for the first time.

It is such an indescribable feeling to want to be able to help your child and have no way to do it. Frustrating doesn’t even come close to doing it justice. Malachi was so smart, strong, funny, and sweet, but when that switch flipped, it was like he turned into someone else. Someone that I didn’t recognize. Every tantrum was followed by a genuine hug and, “I’m sorry mama.” Then he would be his sweet self for a long period of time. The longest we would go without an episode was three days and we were always on edge, waiting for the next bomb to drop. When it would, it would be over the most menial thing, and sometimes I couldn’t even identify what it was. He had melt downs when he was happy, sad, and indifferent. The worst ones were when he was angry. It was rare that he actually hurt someone, but when he did there were consequences. We would take away screen time, he would get no “special treats” (sugar), we would put Thomas the Tank Engine on a shelf for days at a time, and he always took his consequence like a champ stating, “I know mama, I don’t get my pwivwiges today.” I truly did not believe he had control over himself during those crazy moments, but I still felt that we needed to address it and let him know that it was not okay. It’s heartbreaking to punish your child when you know they don’t have full control over their actions.

I cannot tell you how many times I pondered nature versus nurture. I know that Malachi’s biological father had severe anger issues and lack of self-control, but I truly believed that it was due to the fact that he was not so lucky in the foster-care system. I just knew that with a solid home and structure that we would be able to deter any predisposed issues Malachi might have. I thanked God that he did not have the cognitive issues that his biological mother had, but again, I don’t know the extent of her issues either. Then there was the fact that I firmly believe he was exposed to some sort of chemical when he was in the womb; did that have an effect on his behavior? A few of the professionals we have seen along the way say that it could definitely be a contributing factor but there is no test to tell us definitively.

It was by chance that I saw our local school district was having their preschool screening. I knew that they worked with occupational therapists so I signed Malachi up and we went to the screening. I didn’t expect that he would qualify for the ECE program because from what I understood of the program there had to be a “special need” that would hinder his learning. Again, he is an extremely bright little boy. I thought that at the very least, they could guide me to the right place to get some help. Of course he was perfectly behaved and charming for the screening and he passed with flying colors. They could not help me find an OT, but they did accept him into the ECE program and he would start preschool in August of 2016.

The summer before he started school had good stretches and bad ones. The daycare was giving him the melatonin at nap and with the needed sleep, his behavior was not as out of control on a daily basis. We were still eagerly anticipating that occupational therapy appointment. Again, I got on the phone and searched for some assistance. I found a therapist in Naperville who agreed to see Malachi for $100 per visit. Rather than ask for permission from my agency and get a “no,” or a, “I’ll put in a request,” I decided to just do it and ask for forgiveness later. We saw Kristy twice a week for several weeks and she actually taught me a lot. I feel that she was instrumental in helping us understand how his brain worked, and I believe that’s when things slowly started to improve. She was young and sweet and Malachi loved going to her office. She had trains and she was fun. Fortunately, she was able to see a few of his outbursts and give me some advice on how to handle them without getting hurt. The most valuable tool she showed me was “the hold.” I had to maneuver him in front of me with his back to my stomach, wrap my legs around his and hold his arms in a “pretzel” form and wait it out. She taught me how to soothe him and breathe while we tried to calm down together. Aside from the occasional head butt, his toes digging into my ankles and the occasional kick to my calf when he would break free, “the hold” worked well. I could feel his body start to calm and that is when I would release him and he would fold himself into my lap and cry. There were times when I had to hold him for so long my entire body would start to shake and I would be sore afterwards, but it was still better than letting him tear up his room and throw things. She never gave me an opinion on a diagnosis, but rather tools to help me deal with the behavior. She was expensive, but worth it.

When I told my case worker about the visits, she did not appear angry, but she did say that she would need all of the records released to her and would have to have a weekly conversation with the therapist. I asked her once again when we could get the behavior therapy at the house like he brothers had, but shockingly, she dismissed me stating that it’s just not a good fit yet. I did ask that we see an actual psychiatrist to talk about medication, and she agreed to put me on the waiting list at Lurie again. I felt like it was time to explore the medicine option considering how long we had been struggling.

When Malachi started preschool in our district we had to stop seeing Kristy because she only had morning hours and his school was from 8:30 – 11:00 am. I felt okay with it because we had finally gotten our appointment date for occupational therapy. We were scheduled for September, four weeks after he started school. We finally had to remove him from KinderCare completely because they were no longer able to handle his tantrums and I wouldn’t even get out the door before he started throwing things and thrashing around.

It didn’t take long for Malachi’s preschool teacher to request a meeting with me regarding his behavior. I had documented it on paper, but it’s different to start witnessing it first-hand. One of the hardest parts about seeking treatment for Malachi has been the fact that if you hadn’t witnessed one of his episodes, you probably wouldn’t believe me. He is such a funny and charismatic little guy that it’s hard to picture him reacting violently. His teacher was a breath of fresh air. Her voice was sweet, her demeanor calm and she genuinely wanted to help us. I allowed myself to feel hopeful once again. When I told her of our journey to get to her classroom and she responded with, “Well, we will never kick Malachi out of our classroom, we will get him ready for kindergarten and want to help,” I fought to choke back the tears and the shakiness in my voice. In his classroom there was the teacher, two aides, an occupational therapist and a physical therapist. There were approximately 12 kids in the class and I was so very grateful that we lived in such an amazing school district.

We had our Loyola occupational therapy appointment in September and his therapist, Jenny, recommended a course of OT for sensory processing integration and to help him with transitions. She noted that it was extremely hard for him to focus, and he was in need of some behavioral therapy along with her treatment. That was enough for my case worker to finally call the state and get a therapist to come to our house for evaluation. I was so elated to finally have things moving in a positive direction.

Malachi continued to have behavioral issues in his preschool program and would frequently have to be held down for 30 minutes or more. There were several times when the teachers could not physically hold him, and they had to call the principal to do it for them. There were also days when he made it through without incident. I called the therapist that Malachi saw at Lurie and asked if she could pull some strings and get me bumped up on the waiting list for the psychiatrist to try medication. The best she could do was a December appointment. I took it and counted down the days. We also had a meeting in December with the school, and at their prompting we formed an IEP for Malachi. There were several things in place to help him transition through his morning. Some of them worked and some of them didn’t, but I was so happy to have people helping me figure it out that it made it easier to deal with. They went the extra mile every day with my son, making charts to use at home, sending different breathing techniques, accommodating him to go in to school before everyone else to transition him into the classroom, and reporting to me every day how he did and what they think might help at home. They were truly a gift and I will never be able to put into words what that program did for us, and continues to do for us. My case worker was kept informed of all of his plans and required a call or email from the teacher with any changes. There are no logical reasons why this bothered me so much, but it infuriated me every time the case worker would contact my son’s teacher to get an update after I already informed her myself.

Since I didn’t have any options for him during the afternoon, and I still had a job to do, I reached out to an awesome woman who I have known through a local women’s group I belong to, and asked for her help. There are certain people in life who were meant to care for children, and you can identify them fairly quickly with their confidence and the way they communicate with ease with the youngest of our population. My sister has always been one of those people and she is amazing with children. I saw the same qualities in Monica that my sister possessed. I knew that she kept children at her home and had heard nothing but great things. I also knew that she was trustworthy and sweet. What I didn’t know, was if she could handle what presented with my particular child. There were already two places that couldn’t handle him so I had my doubts. I explained the entire ordeal to her, and I don’t know if she sensed the fact that I was literally moments from breaking down in an all-out sob, or if it was because she truly meant it, but it was without hesitation that she said, “Bring that baby here, we got this.” Monica was yet another brightly-wrapped and unexpected gift during our journey and I don’t know what I would do without her. She keeps him three afternoons a week and he loves going there. Because he is happy there, the melt downs are rare. Don’t get me wrong, she’s seen them, and she handles it with ease. I chose not to tell my case worker about Monica because I was just tired of it all; he’s my son and I’m tired of asking for permission to do what I know is right. It was the first time I took that kind of risk with the agency.

When Tami, the behavioral therapist that I had been waiting on for three years, finally arrived at my house on a cold Wednesday evening that winter, I thought she looked to be just a few years older than my daughter. I liked her right away, but as our visits progressed I wondered what her true objective was. Her first visit was getting background information and asking a myriad of questions about how we ran our household and how we handle Malachi. She had seen his older brother and concurred that they did have some of the same behavioral challenges. It started to feel as if she was more interested in giving me therapy as opposed to Malachi. She would frequently ask me, “How do you feel about that?” “What kind of support do you have?” “Do you often feel overwhelmed?” “Is your family supportive?” I was uncomfortable with her line of questioning and always tried to steer the conversation back to Malachi. She recognized that the school had already given me many of the suggestions that she had in regards to taming the outbursts, but again, she would often lecture me on how my reaction could affect Malachi. She reminded me several times that my state of mind had to be right in order for his to be right. I’m not going to lie, it is VERY hard to deal with the behaviors that Malachi has sometimes. They do occasionally get the best of me and sometimes end in me screaming at him and slamming doors. There are times I have to remove myself from the situation and lock myself in the bathroom to calm down before I continue “the hold,” or corralling him to his bedroom. I frequently have to force myself to do the same breathing techniques I teach him. Other times, as I hold him down while he sobs, I silently cry right along with him. I do not know that there are many people alive who could deal with these ongoing episodes and not melt down themselves from time to time. At the same time, I am fully aware of how important it is for me to hold it together. If I don’t keep it together, how can I expect him to? I’m the adult. I didn’t take offense to Tina’s personal inquiries until I got our first evaluation and she listed the number one goal as, “ongoing support to strengthen the bond between foster-mother and child.” My bond with Malachi is just as strong, if not stronger, than if I gave birth to him, and I love him so much it blinds me at times. He is definitely a little quicker to pull it together for his dad, but sometimes there are moments he can’t even get him to listen effectively. She also believed that Malachi was confused about his home environment because of the role his biological mother and siblings still played in our lives. I didn’t disagree with her on that topic, but did not think it was a contributing reason for his behavioral problems. Her second goal was “promote understandings of Malachi’s biological and current foster home.” She wanted to start to explain our current situation to him on her terms. My initial gut instinct was to say, “Back off bitch, no way in hell you are going to take over explaining ANYTHING to my son, who do you think you are?” But instead of that route, I pulled the plug on the whole thing. The agency (my case worker and her supervisor) fought me on it, but I was insistent that if they sent Tina to my home again, I would not answer the door. I fought for a home therapist, and I got it. I brought this woman into my home after years of asking and complaining. Don’t get me wrong, I do believe that Malachi was at an age where he likely was getting confused with Bio-Mom whispering in his ear, “I’m your mom and you’ll be with me again one day,” like she did to all of her kids, but I know my son better than anyone and I knew what I was doing in that regard. He is fully aware that his story is special and unique, just like his sisters entry into this world. He likes to tell anyone who will listen all about it, the grocery store check-out clerk, his soccer coach, or random strangers in a waiting room. Malachi is not shy and loves to talk to people, and when he runs out of train things to talk about, he’ll randomly say, “This is my mom. I grew in someone else’s tummy but she loves me forever and we are a family,” and then he moves on to the next topic. If, by some strange and crazy psychotic moment, Judge, you decided to give Bio-Mom back her rights (they had been terminated at this point in our story but he was not adopted yet, which I will cover later), then I would deal with that. I was 99% sure that wasn’t going to happen so there was no way I was going to allow someone else to teach my baby about OUR family. Bye-Bye Tami.

We met with Dr. J, the psychiatrist a Lurie Children’s Hospital in December, and she did give him a diagnosis; however, she would not tell us what it was because we were not legally his parents yet. True story. Even though we had been his parents for four years, she could not give us the medical information about our son. It took another three weeks for that approval to come through. In January she informed us that Malachi did indeed have ADHD and she wanted to medicate him with Focalin. We were willing to try just about anything at that point and agreed. It only took another month to get all of the “legal guardians” to sign off on it.

I could bore you with the specifics of what happened when we started to crush the little blue pill into a spoonful of applesauce every morning, but really all you need to know is that it did not work. AT ALL. We spent the next three months adjusting the dosage and going from an instant pill to a time-released pill, but in the end, it just wasn’t working. In fact, both the school and we agreed that it made him worse. He may have had more impulse control, but he was weepier and became frustrated at things that didn’t typically phase him. He couldn’t handle if a line wasn’t cut straight or something wasn’t organized the way he thought it should be, and these were not typical behaviors of my son. He also turned into the Tasmanian devil when he was coming down from the dosage.

Instead of jumping through the countless number of hurdles it would have taken to get a different medication approved for a four-year-old, we decided to continue on the course we were currently on. We tried the medication and it felt wrong the entire time. I don’t judge the parents who use it though, and if it worked, believe me, we would be taking advantage of it as well. The occupational therapy and the ECE program were doing amazing things for him. That, coupled with the changes we made at home, was working. He was doing better every day, every week and every month. I researched foods to avoid with ADHD and we really try our best to steer clear of them. We put restrictions on screen time. We have systems in place to help him through the rough spots that seem to be less and less all of the time. The case worker tried to tell me that we had no choice but to try another medicine and had to follow through with what he doctor recommended, but we ignored her and just continued on our own course. She never addressed it.

We are currently in our second year at the same preschool with the same amazing team of teachers. The IEP is in place and our goal is to have it gone by the time he finishes kindergarten. We still have some challenges, but Malachi has made huge strides toward managing his emotions. When there are episodes, they don’t last as long and he is growing leaps and bounds when it comes to identifying his feelings and asking for help. Sometimes he will bring me a toy he’s playing with, and with a crinkled forehead, pursed lips and heavy breathing will say, “You should take this because I need a break from it because I’m getting frust-er-rated.” Then he hands it to me and wraps his little arms around my neck and gives me a giant hug. THAT is the kind of behavior we work towards. When I pick him up every day, the teacher gives me a thumbs up most of the time, and occasionally looks at me and says, “I can’t believe this is the same kid.” There are also times when she brings him to me with a sheepish look that I know means that he had a rough day, but they are far and few between now. On those particular days he climbs into his car seat and says, “I know mom, I don’t have my privileges today, but tomorrow I will do better.” I give him a kiss on the forehead and say, “I know you will buddy.” We are so proud of him and know that his future is bright, maybe not easy, but bright.

There are so many lessons I’ve learned throughout our foster care journey that I couldn’t even begin to list them all. We have grown as a family and as individuals, and we know how extremely blessed we are. I am definitely less judgmental and more empathetic. I have seen first-hand how people who don’t have access to affordable healthcare have to struggle and are disregarded. I don’t know the answers, but I know there has got to be a better way.

I will have one more letter for you Judge. It will be about how we ended the “DCFS” chapter of our lives and started living without looking over our shoulders.

Chaper 17 – Happy First Birthday

Dear Judge,

I don’t know if it’s how I was born or the result of my life’s journey, but I am always preparing for the worst case scenario so I can be fully ready for anything that comes my way. There are many issues that accompany that characteristic, but one of the biggest is the anxiety and worry that something is going to go wrong at any time. So, when I start obsessing over something, I have to remember this trait, and balance what I think “might” be happening with what could be a non-issue. Not the greatest quality for a foster parent. When Malachi started exhibiting behaviors that were foreign to me, it was hard for me to accept that it was “normal” for a boy to behave that way. However, it could be the case, right?

“One-year developmental appointment”

I would get notices every quarter from the Department of Children and Family Services that there was a scheduled “case review.” Basically, this appointment was a “check-up” for our private agency. The case worker would bring absolutely every shred of documentation she had on the case and prove that they were doing everything they were supposed to do regarding Malachi and his siblings. Foster parents were always invited, but the case worker encouraged us not to attend, because with a case involving six children it could run up to four hours, and it was really boring information. Ms. Persons went to the first one because she was unhappy that Angela and Tameka had to spend so much time at a dirty McDonald’s with Bio-Mom’s visits. She said it was a waste of a day off. They did recognize her concern and said the visits would be moved to a new location, but they never were. As soon as I got that notice in the mail I knew the barrage of phone calls would start coming in from our case worker asking for shot records, doctor appointment records, dental forms (yes, I had to take him to the dentist with only four teeth in his mouth), medication logs and “developmental screening appointments.”

When Malachi was about 5-months-old, I was informed that he needed quarterly “developmental appointments” with DCFS and he was, at that time, two months behind. I got an email from DCFS indicating the time and date of Malachi’s appointment. The email did not ask me if the time was okay, it was merely confirming the date and time that I was expected to show up. Fortunately, I was able to accommodate the appointment.

The thirty minute drive downtown was not a problem, but the parking situation did raise my blood pressure. I can parallel park, but I don’t like to, and I certainly couldn’t squeeze into the spots that were available. I ended up parking in the lot that was designated DCFS, but it was just as stressful as street parking. It was less like a parking lot and more like a small dirt field surrounded by a chain-link fence with a very small entrance and exit. There were no designated spaces and it appeared that the cars were parked in a zig-zag pattern. I couldn’t tell where I was supposed to drive, let alone leave my car. I finally chose a spot as close to the exit as possible and hoped that I wasn’t blocking anyone in.

The facility was located on a picturesque street with more mature trees than you would expect for downtown Chicago. There was a bright-green, grassy median down the center of the entire block with a small fence surrounding it. The beauty was instantly gone the minute I was buzzed in through the double doors. The smell of old urine hit my nose and I made a conscious effort to breathe out of my mouth right away. There was uniformed police officer to my left seated at a little card table and straight ahead was a reception area that was shielded by a thick layer of glass. There were parental rights and child advocacy posters randomly hanging on the dismal white walls. Rather than take the risk of the woman with the gun telling me I was going in the wrong direction, I chose to turn left toward the police officer only to have her guide me to the reception window. After signing in, I pushed the stroller to the waiting area that contained a few stand-alone fabric chairs and two black leather couches. On the first visit I sat next to a couple of older social workers catching up on some work gossip, and they instantly shifted their focus to my cute little man. One of them asked to hold him and with a high-pitched grandma voice said, “Oh my goodness what a precious baby, and he is smiling and alert, are you the foster mom? You are doing such a great job, we don’t see too many babies coming in like this.” The comment struck me as odd, but I accepted the compliment as we were called back to the long corridor leading to the meeting room.

The girl we met with was named Bridget and she appeared very young.  She had dark hair with clear green eyes and skin as white as the walls. Her demeanor was very soft spoken but confident and graceful. She chose her words carefully and was slow and deliberate with her delivery. The small room we were escorted into was jam-packed. Along the wall immediately to the right were a line of folding chairs, the back wall contained a kid’s kitchen play-set, a folded mat, two overflowing toy boxes, a play baby crib and high chair. The wall on the left contained two book shelves with games, puzzles and bins full of blocks and other educational toys. Finally, directly to my left was an over-full desk like the one my eighth grade teacher had, taking up the entire length of the wall. In the middle of the room was a kids table and chairs. There was no room for the stroller so I had to leave it in the hallway. I sat down in one of the folding chairs with Malachi on my lap and waited for instruction. The majority of the first visit was spent talking about my little man and his likes and dislikes, watching him smile and assessing his strength. I felt like she was observing my interaction with him. When she asked me if I had any concerns, I mentioned the fact that he did not sleep well at all and had a very difficult time soothing himself. I told her that from the time we brought him home, his body was almost always stiff. He wasn’t that newborn that was comfortable curling up on your chest for long periods of time. It took effort to make him relax. I mentioned that Daryl and I were not convinced that he was not exposed to some drug in utero. I informed Bridget that this is something I bring up on a regular basis to our case worker. She made her notes and said we would just watch this behavior as he grew.

The next two visits went pretty much the same way. Each time Bridget confirmed for me that cognitively and physically, he was developing in the upper percentile of his peers, and I would let out a sigh of relief. She was always impressed with his strength and agility. She would observe him throwing a ball, picking up a small object, and a few other small tasks. Bridget liked for me to get involved as much as possible, so I would build blocks with Malachi, play peek-a-boo and do a small puzzle. She asked questions the entire time we played and learned that he loved to be outside, to read books, but still did not know how to calm himself down or put himself to sleep. As he grew, his behavior became more intense. It was as if every emotion he was feeling was met with such a zest that he couldn’t contain himself. If Malachi was happy, he was emoting that with 110% energy. If he was hurt or angry, it was met with that same intensity, only louder. His temper was so explosive for such a little person. It would typically happen when he didn’t get his way, which was normal, but he would sometimes scream, shake and cry for an hour or more for no visible reason. She asked me if I was overly concerned about the behavior and I indicated that I was; however, most people assured me that I was dealing with typical “boy” behavior and I just wasn’t used to that because I had raised two girls. Ms. Theresa, Malachi’s babysitter, had raised three boys and she did her best to reassure me that his behavior would get better, and it was just that “XY” chromosome factor. But then again, even she would shake her head sometimes with his temper. Bridget always took notes but never said much beyond the fact that he was developing normally. I always felt like she was observing me as well and would ask questions about Bio-Mom and Bio-Dad, the visits and the process. I wasn’t sure if she was just being friendly or if it was part of the appointment, and I always kept my guard up when talking with her.

Toward the end of our fourth appointment, Bridget handed me a clipboard with a questionnaire on it and seemed embarrassed when she asked me to fill it out.  She apologized and said that it was a new DCFS policy and all foster parents with children under the age of five had to complete it. When I started reading through the invasive form, I understood why she hesitated. The questions were fair enough, but the way they were worded was so negative and aggressive that I felt uncomfortable even reading them. I can’t remember them all, but a few were worded something like this:

“I often get angry and resentful because my life has changed so much after my foster child came”

“I feel distraught and alone when I can’t get my foster child to stop crying”

“I often feel like my foster child hates me”

“I often want to hit my foster child when they misbehave”

“I am depressed and regret the decision to become a foster parent”

Then I was instructed to check a box that said “always, never, sometimes, or I don’t know.” There were two pages of questions and not one of them said “I love my foster child” or “my foster child has enhanced my life.” There was NOTHING positive on that paper.  I wanted to discuss it with Bridget but chose to remain silent and check “NEVER” for every question.

Of course there were certain days when I wondered what in the world I was thinking when I jumped on that DCFS-crazy train, but not because of Malachi himself. I mean, he was challenging at times, but he was my son and I love him. It was the system, the way it was structured, and the way I was treated that I got so frustrated with, not caring for my son. But there were no questions about that, only negatively worded statements that, to me, were looking for someone with hate in their heart for their foster child.

I drove home obsessing over the questionnaire. It was so hard to piece together the puzzle that was the foster system. There were so many moving parts, but none of them were communicating with each other effectively. I was curious as to what someone was trying to accomplish with those questions. If they were trying to piss off a foster parent or two, they accomplished their goal. Of all of the things that needed to get changed within the system, and they chose to pay someone to come up with a questionnaire like that. Just another frustrating moment.

“Turning One”

As I sat going over the checklist for Malachi’s first birthday party, I allowed myself a few minutes to ponder how much the last year had changed our lives. There were the obvious ways that included lack of sleep, busier schedules, fewer dinners out and no more last minute excursions. Then there was the state of Illinois and our private agency stressors that were just too many to even articulate. But what I wanted to focus on was the fact that this little man changed our lives for the better in so many ways. His smile could lighten up our moods and his laughter was the best medicine ever. He had such a massive and exciting personality for such a little person, and we took great joy in watching it evolve every day. It didn’t matter what emotion he was displaying, it was abundantly clear how he was feeling. I did not think that we were “missing a piece” in our lives before him, and I really try to stay clear of cliché sayings, but it really did fit to say that he completed our family. He challenged us in ways that made us stronger as a unit, and he showed us happiness that brought us together on another level.

Malachi’s first birthday party/sibling visit was a success. Marco was there with Justin and Edward, but he didn’t drive himself, which was curious to me. He rode along with Tim, the agency aid who transported the boys. Marco greeted me with his backwards left hand “shake” and his soft whisper “Hello Stephanie.” What stopped me in my tracks this time was his jacket. My 9-year-old daughter had the same exact one. I know, because I bought it at the girl’s clothing store “Justice” just months prior. It was a pink and green floral-patterned, zip-up hoodie that fit his larger frame a bit snug. Marco and Tim sat alone the entire visit and didn’t really communicate with anyone. Kena brought Angela and Tameka because Ms. Persons wasn’t comfortable driving outside the city, but when she asked a few months prior if she could ride along with the transporter, she was told it was against the rules. Cheryl and Darrin were there with Jay and Josie, and about 15 minutes in, Cheryl whispered in my ear, “Tomorrow we discuss the fact that Marco is here with the transporter and whether we tell Ms. Persons, and more importantly, what in the world he was thinking when he bought that jacket.”

The party itself went very smoothly. We had Mickey Mouse cakes, hats, music and even an appearance from the big mouse himself. Malachi had always been consistent with the fact that the more chaotic his surroundings were, the calmer he was. He wasn’t sure what to think of the life-size version of his favorite character trying to give him a high-five, but quickly warmed up. Luckily the weather held out and the kids were able to decorate pumpkins outside and run around the back yard.

Two weeks prior to Malachi’s first birthday, Bio-Mom showed up to the visit with a chocolate-chip cookie and size 2T, used underwear in a Jewel bag for him. Taryn was with me that week and got to meet Bio-Mom in the flesh. It was interesting to watch them interact with each other because Bio-Mom was actually comfortable and confident when talking with my 9-year-old daughter. Somehow, Taryn’s presence put her at ease and we ended up having a nice visit as we sang happy birthday to Malachi and exchanged pleasantries without any tension. Before she left, Bio-Mom reached deep into one of her bags and pulled out a card with no envelope for Malachi and said “you can read it if you want to.” Pictured on the front of the card was a chunky baby with puckered lips, a scrunched up face and a party hat on, but when I opened the inside, all that was there was the pre-printed “happy birthday.” I handed her a pen and asked her if she wanted to sign it. She sat down and wrote “I love you son, we will be together soon. Mom.”

“Next Time”

I have such strong feelings about the way the foster-care system is run and how jaded the people in it are; however, I find myself becoming increasingly more negative and defensive, and less flexible and caring. I love my son and what he has brought to our family and I wouldn’t change my decision, but I feel like I’m starting to lose my ability to understand or care where someone else is coming from. It’s so hard when your feelings are so exposed and vulnerable. I’ll tell you about more frustrations next time.

*Names have been changed