Follow up

When he turned two it became my mission to find a diagnosis. I was his mother from the moment we picked him up and I knew that something was not right fairly quickly. When he was removed from his first daycare it just confirmed my suspicions. It was when the second daycare facility couldn’t handle him anymore that I really started to research and make even more of an effort to find answers despite the obstacles in our path. He didn’t even last a full year in that preschool/daycare, they just couldn’t handle his behavioral outbursts. I didn’t know where to turn. If you’ve read my previous chapters you are aware of how bad these behaviors can be.

We have seen countless psychiatrists, psychologists, neurologist, therapists (occupational, cognitive, play, and behavioral), along with some medications that only made things worse. Surprisingly, in the end, the public school system is where I finally found some help and understanding. I was told from the beginning of his journey there that he would never be kicked out of the school. They worked with me and my son from the moment we stepped in the door and I felt hope, and things did start to get better. Until they got worse. Here’s the things about my adorable child… everyone loves him and his charisma. Even the day cares that released him still keep in touch, send him birthday cards and genuinely want to see him succeed. He is so friendly, outgoing and smart. He’s handsome and charming and really funny. It’s not just because he is my son that I say he is special (well, at least I don’t think so), he really is one-of-a-kind.

Amongst the myriad of diagnoses we have been given from all of the professionals sought out are ADHD (that one seems to be agreed upon by all), pediatric bipolar disorder, DMDD (disruptive mood dysregulation disorder), ODD (oppositional defiance disorder), and traumatic brain injury from exposure or trauma in the womb. Of course, each time I heard a new opinion, I searched the internet like a dog chasing its own tail, and convinced myself every instance that this was indeed the disease, disorder or disability he had. Then he would do something amazing, say something brilliant, stroke my hair and tell me how much he loved me, have a week or two of “normal” behavior, and I would squash that conclusion and tell myself that he was completely fine and just like all of the other kids. Then I would hold my breath until the next episode. I do a lot of holding my breath while waiting to see what’s coming next, praying that a magic pill will appear and make it all better.

We’ve tried it all at home too. You name the solicited or unsolicited advice we’ve received, we’ve heeded it. Consequences, routine, punishment, role reversal, more play, diet changes, less routine, bedtime earlier, and several more. NOTHING has worked. I’ve actually been told that I just need to stop spoiling him so much and take control… because that never occurred to me. It’s beyond frustrating to love such an amazing little boy and not be able to help him. It’s what mom’s do, right? We fix it and if we can’t fix it, we find someone who can at least help.

In a short couple of weeks we will be amending his IEP and removing him from that same public school midway through his kindergarten year to an alternative school. The IEP was new to me and I’m still learning the ins and outs, but I am grateful for it. We are moving him to a program that will better help him regulate his emotions. I find myself pondering, yet again, if this the right move to ensure a brighter future for my baby. There are so many pros and so many cons and emotionally, I’m spent. This really shouldn’t be as hard as it seems. So many opinions and friends pointing us in different directions… all with the very best intentions, but overwhelming none-the-less.

So, in true Stephanie form, I pulled out my computer and started to type to try to clear my brain. It’s funny that I would write a poem because I always thought they were a little corny. Even though I feel like I’m writing for Dr. Seuss, somehow it makes me feel better. As I read through it over and over again, I wonder if I’ll delete it or share it. Either way it doesn’t matter, it helps me cope.

My Poem

When I close my eyes and focus on only what I’m feeling, so many emotions come to my mind

Fear, anger, sadness, fatigue, confusion, blame – My intuition can’t see clearly – totally blind

But, by far, the strongest feeling of all is the deeply-planted love I have for him

The fear battles with the excitement I have for his future, the light starts to grow dim

The conundrum and confusion are real and I get angry that there is not a good answer

The outside worlds judgement and my own anxiety grows inside of me like the spread of cancer

I am his mother, why can’t I fix the trauma his brain has no choice but to endure?

Surely there is someone, somewhere who can help me figure out a cure

We’ve seen psychiatrists, psychologists, neurologist, therapists, and many more

They all say different things, but it feels as if they give up, like it’s too much of a chore

I want to blame them for their failure and their lack of caring

It’s like they give up and think he’s beyond repairing

I want to yell at the teachers, “do more, you’re not trying hard enough”

But then they do something spectacular, and it’s like the universe is calling my bluff

When I let him go into the world each day

My gut wrenches to think of the obstacles that stand in his way

Every moment he’s away, I wait with bated breath to see what will unfold

I literally have no idea which way it will go and what the day will hold

Will he come home beaming with pride that his strategies were a success?

Or will he have his head hung low and be full of anxiety and stress?

When he has an especially bad day all I want to do is bundle him in a hug and not let go

That helpless feeling wreaks havoc on my emotions, like a sad song on the radio

I know he is stronger than I will ever be

How do I let him know that this is what I see

Alas, the judgement of others creeps in my already-disorganized brain

Their looks of disdain and disapproval drench me like a torrential rain

I want to scream at the top of my lungs that I have never worked so hard to fix anything

But almost every time, my perception of their stares start to hurt like a bee sting

I fear I have run out of options and there is nothing else I can do

Then I have a good cry, put my superwoman cape on and forge through

He is only a child and has no idea why he can’t behave like the others all of the time

I would do anything to make it better for him, would even consider some small-offense crime

When I think about how smart he is, the negativity subsides some

I know that there will be better days and we will hold onto them until our hands are numb

Even if things never change, and my bright boy always has this unfortunate battle

I vow to continue to provide support and love and I will always climb back up on that saddle

God made us each uniquely, and in my heart I know that to be true

That gives me comfort and helps my thoughts turn to a more positive point of view

We will be okay in the end, despite the lack of answers or assurance

It will only make us stronger and build up our endurance

Malachi pic 1 2018

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.

Chapter 20 – Felony Charges

Dear Judge,

You know the dream that happens right when you start to fall asleep, before you’re actually all the way out? The ones that sometimes will incorporate your surroundings. Whenever I have one of those that is not so pleasant, like maybe a death or a car accident or some other tragedy, I have a weird OCD obsession and force myself to wake up fully, sit up and acknowledge, out loud, that it was just a dream. Because that way it won’t come true and become déjà vu. I have no idea if I heard this somewhere or if I made it up in my mind, but I have to do it. The most haunting one that I can recall stirs up such a powerful response in me that my body quivers and it is almost too disturbing for me to put down on paper. I had a “dream” that Malachi was standing in the middle of an abandoned street looking for me, and one-by-one, several angry-looking men appeared on either side of him with their guns drawn. They were so intent and angry with each other that they didn’t even see him standing there right in front of them. I was running to get to him, but I wasn’t getting anywhere. As the first gun-shot went off, Malachi looked straight at me and as our eyes locked, I sat up with a scream and repeated out loud, “this is not real, this is not real.” I didn’t get much sleep that night. I’ve spent a lot of time analyzing that dream and in my non-expert opinion, I believe that it is derived from the fear that I had every time I would hear about an innocent bystander getting shot in a gang incident. Even to this day, with him safe and sound in our home, when I hear of a child getting caught in cross-fire, I cringe and think about what could have happened to him if Bio-Dad wasn’t required to go through the foster-care system. What if they had just handed him over after paternity was proven. It sends a chill down my spine and brings tears to my eyes every time.


As we approached Malachi’s second birthday things were calm. Bio-Mom was inconsistent with her visits and I never knew when she was going to show up. Even though it was annoying every time I would expend the energy that it took to pack a diaper bag and get a toddler ready for a three-hour outing, only to find that she wasn’t coming, it was with a twinge of guilt that I found myself exhaling as I remembered that she had missed another court requirement. Although my compassion for Bio-Mom did not go away completely, it definitely made fewer appearances as time went on. I started to develop some anxiety when thinking about how I was going to describe Bio-Mom to Malachi one day. I wanted him to have the full picture of his biological mother, but also wanted him to know, beyond the shadow of a doubt, that she loved him the best way that she could. I will have to explain to him that she was not born with the ability to be a mother. She didn’t know how to love him the way he deserved to be loved, even though I do believe she tried. My husband is one of the most logical, yet fair people I have ever met, and when he used to catch me rolling my eyes or smacking my lips with distaste when I would hear a story of someone doing something that I didn’t deem appropriate or right, he would remind me that we are all doing the best that we can with what we are given. He was right. We are all born with our own individual strengths and weaknesses, and we have to maneuver and climb through life using both of those the only way we know how. Then, in his always very calm demeanor, he would add, “Some people are barely holding it together every day, so this may be the very best they can give at this moment.” He makes me a better person in this way. Somehow, as time went on and Malachi grew, it became easier to not take things personally with Bio-Mom. Even though I started to ease up on my anxiety and feel more confident that Malachi would ultimately be a Davis, I still occasionally let the paranoia creep in that she would get custody. I did not trust the process at all.

One Thursday morning when Bio-Mom showed up 15 minutes late to the Peekaboo Room, I noticed something was different about her. Not in her physical appearance, but in her presence. She hung her coat up and maneuvered her way to us with all of her bags in tow, and when I bent down to start my departure routine by trying to calm the storm that was to come when Malachi saw her, she abruptly blurted out an uncomfortable but confident laugh, and without resentment in her tone, said, “Why don’t you just stay today because he’s just going to call for you anyway.” Our new case aide, Pamela, shared a shocked glance with me and then agreed that it was a good idea. It ended up being the best visit we had. Malachi even picked up on her new and more relaxed vibe. He didn’t physically go to her, but he did allow her to help us build blocks and even handed her a few of them so she could contribute to his creation. At one point, even though her tone was still hard and not kid friendly, she said to him, “Malachi, why don’t you give that one to your mom,” and was pointing in my direction. It was the first time in a very long time that I allowed myself to feel something resembling compassion toward her and our unique situation, and I found it hard to contain my emotions once again.


During one of our home visits, I learned from Kena that Bio-Dad was not being compliant and was angry with her because before he was incarcerated he was almost done with his 60 days of drug rehab; however, when he got out of jail he had to start at ground zero again. He was still mad because he didn’t think he should have had to complete any services at all. He felt like Kena had tricked him into revealing personal information about himself and then held it against him. He was unhappy because it was hard to get around to his visits and requirements without a car or bus money. Kena told me that he accused the agency of only accommodating the foster parents, and that he had to work too hard to even get to see his son once a week. Considering the obstacles I had on a weekly basis dealing with foster-parent requirements, I chose to remain silent, take the high road and remind myself that we all have our own perspective. In the end, I did not believe that Bio-Dad would be able to complete all of his services. Even though I was happy that it was one less hurdle to jump over to gain legal custody of Malachi, it made me sad for the young man who not only shared my son’s DNA, but was also once a child in a foster home himself. At one point I saw potential in Bio-Dad, but I also knew that he likely would not recognize that he had other choices in his life and continue to choose the wrong path. I knew this for sure when my husband called me in the middle of his work day to tell me he received an interesting phone call.

I was making dinner on a Wednesday evening when Daryl is normally at his busiest time in the office, and I saw his name pop up on caller ID. I cautiously answered and then just got confused. Our private agency has never called my husband regarding anything, so when he said that the CEO of the agency, Melanie, had just called him, I went into a tailspin of questions before I even knew what the conversation was about. She told Daryl that she chose to call him because I was more emotional and she did not know how I would handle the situation. She went on to inform him that the agency was on lockdown until further notice because Bio-Dad had repeatedly threatened the life of our case worker and he was “on the run.” When I asked the myriad of questions that popped into my mind, he could not answer any of them… because he did not ask any of them. I was not irritated with him for not asking the questions, he was consistent. I was really angry with the agency for not calling me. When he said “I have to go, I have patients waiting,” my heart started to triple beat and I quickly responded with “No, not yet, I need more. Should we be concerned?” In his always calm, always confident way, he said, “Well yes, that is why they called. But if we are aware and on guard it will be fine.” I was not satisfied, but agreed to let him go back to work. Of course I immediately picked up the phone to call Kena, and as expected, she didn’t answer.

Kena called me back the next day and told me what she could, or what she wanted, of the story. She was obviously shaken up, and said that it had been escalating for weeks with Bio-Dad phone calls and texts accusing her of stealing his son, manipulating him and not giving him a chance. In the end, she had pages of texts from him threatening her life, and although she wouldn’t tell me the specifics, she was adamant that they were very real threats and included the use of the words gun and knife. Kena went on to tell me that because the police had not been successful in finding Bio-Dad, the FBI was called to assist, and they believed that he was in Indiana. I was unsure if I believed the FBI part of the story because I thought that if that were the case, we would have been notified by someone other than the CEO of the agency. Given the fact that Bio-Dad had all of our information and our office address, and we had his son, I was shocked that our local police were not involved. I had so many questions, but as always, I was only given little pieces. Ultimately, Bio-Dad was arrested a week later in an emergency room in Chicago where he was assaulting his girlfriend in the waiting room. He was charged with a felony and I did not worry any more about him getting custody of Malachi. I did, however, wonder how my son would handle the knowledge of his biological father one day. It’s hard to explain situations to our children when we don’t fully understand them ourselves. I am certain Bio-Dad also loved Malachi the only way he knew how. He was born with the ability to parent inherently; however, his life circumstances prevented a certain type of growth that is essential in making the right life choices. The situation that he was born into was part of a vicious cycle that made it hard to even recognize that there was another way. It’s hard for me to grasp because I grew up loved and provided for by my family, but it appeared to me that Bio-Dad lived his life in a constant state of anger.

“Next Time”

Malachi turned two-years-old on October 23, 2014 and our case goal was still “return to home.” I gave up trying to understand why the process was so long, because there was nothing that could help me make sense of it. However, I did settle in and learned how to live with the constant invasion of our privacy and parenting. I’ll talk a little bit more about that next time.