I had been sitting in on AJ's RPM session. His provider had just moved to a new location and I was stoked to have him on board with regular sessions throughout the school year. Except that didn't happen. He refused to work, became violent, ripped off his cochlear implants, and after 3,000th time-I made a mad dash to the bathroom.
My mind kept chanting- What the hell is wrong with you?! Get it together!
Except I couldn't. This was the beginning of a downhill spiral I now refer to seven.
I thought the early years with AJ were the most difficult. If we could get through those, we could get through anything! We're on the up and up! I saw the light at the end of the tunnel a few years ago (finally).
The truth?
This seventh year has been the HARDEST in our entire existence as AJ's parents.
I could see his behavior was not going to improve simply by practice, framing, or storyboarding the activity. None of that was going to work. I resorted to understanding we were going to be done with RPM sessions for a while until we could figure out what was going on.
September brought new worries and challenges. AJ's school had gone to a new layout, making grades into suites (ie a "suite" consisted of two regular size classes combined). For AJ this meant he was no longer in any spaces he was familiar with other than the gym. He was presented eight new spaces and four new staff members when school began. A few weeks later, another major staff change. Sometimes the broad ideas that administrators have do not translate well to the children whose educations are at stake.
For over a year AJ had been illustrating extremely difficulty sleeping. Despite my internal battle, trying everything under the sun, and my clear disdain for the idea, we began a mild medication to help AJ sleep.
I began to hear mild whispers about his behavior at school. This was a main concern for both us and the school team. After discussing with our pediatrician, we had AJ evaluated for the second time for autism. The entire appointment was beyond ridiculous. They had absolutely no idea how to test our child. Let me say, that we are not fans of older practitioners. We left, with the information that our son has "autistic tendencies" but not the actual diagnosis. We were also told that he would never improve, what we were seeing was about it. Don't get your hopes up. Annnnnnd that's when we knew it was over. When we begged for help with behaviors, they referred us to other older practitioners in the area of behavior who had waiting lists out the ying-yang. We were not disappointed in the lack of diagnosis, but rather with the lack of professionalism and knowledge as to how to test our son.
It was a waste of time.
At the end of October we passed family court in Bulgaria and legally became Mimi's parents. We flew out at the end of November to pick her up. AJ did marvelously well during our first trip to visit her back in July 2014, so we were psyched knowing he'd do well again.
For many reasons, those two weeks in Bulgaria were the longest weeks in my life. AJ did not do well. In fact, it was terrible. He was completely non-functional. He did not attend school, he did not wear his cochlear implants, he did not eat, he did not want to do anything but roll in his bed. Nothing in my binder of preparedness for my mother-in-law was going to help this little boy. When we would Skype, I would watch him sinking farther and farther into this weird abyss. He was not my son. I was concerned for his health and concerned for his heart. Being thousands and thousands of miles from him and trying to be a mom to a new child was beyond what I could handle.
Our first night back home AJ crawled into bed with me, got as close as he could and fell asleep. He didn't move all night.
In the seven years we have had him home, he has NEVER done that. Ever.
His behaviors continued to escalate and he began to expression extreme aggression toward his new sister. Now, we were prepared for regression on his part, jealousy, and all that good stuff, but this-
was not normal.
We decided to see a psychologist with primary practice in the adoption world. After an hour phone conversation, she understood my son more than anyone else we have ever come in contact with. She agreed to try and help with the behaviors (if you haven't guessed by now AJ is very complex). I learned about AJ having sensory memories of his own past as an orphan and how to replace those with good memories. I learned how his relationship with food is so multi-faceted it makes my head spin. When we saw her, I was in tears THANKFUL he displayed his behaviors in her office. Thankful she could see what I had relayed in previous conversations.
At this point, AJ had barely worn his cochlear implants in months. He could not deal. He was very aggressive, and moving non-stop. He would walk through the house and swipe things from all surfaces. He could not sit down and be still. Sometimes I felt like he had no idea what he was doing. Not a clue. His sleeping had become far and few between again-even with the medication. He was still lashing out at Mimi and we were needing to monitor their interactions closely. So much for positive bonding. He was depressed. We tried oils, creams, no-screen time, we've always had a strict bedtime routine so we continued that, we did EVERYTHING we could think of to help him. And it wasn't WORKING!
So many questions asked. What if we put something in his hands, is he more apt to keep them busy and not go for his implants. Does he like hair, is he reaching for a sensory need? What is he trying to tell us. Behavior is a form of communication. Behavior charting and tracking was started in the school environment. AJ was no longer accessing his education because he was not HEARING. You cannot access your education as a cochlear implant user if you are not wearing your implants. He was isolated. In addition to his environmental and staff changes at school, his programming had shifted into a bad, bad gear. His education was taking a complete nose-dive.
We researched and requested he be sent to a specific school for special needs children.
I observed AJ in his school environment for one entire day.
While I can't go into detail, I will say:
It was 800 shades of WRONG.
Things were already in motion due to our request above, but this sealed the deal. AJ hated going to school. This is NOT my child. The day he cried getting out of the car? Broke me. Continuous meetings, correspondence, and more things going around and around in circles started cycling.
AJ began a cycle of sickness, sick almost every two weeks on the dot. Broken sleep and sickness mean more seizures and dis-regulation. On top of everything else that was happening, it was beyond what we could bear.
Out of desperation, I called AJ's neurologist and requested another EEG. Perhaps these behaviors were being triggered by seizures? At the follow-up appointment, he told me that AJ's brain showed abnormalities from the beginning. Meaning, from the moment they turned the EEG on his brain was going haywire.
So here's what I learned:
AJ has frontal lobe damage.
Thus, he has very little to no executive function and no impulse control.
Well, HELLOOOOOOOOOO.
That makes TOTAL sense.
We knew he had frontal lobe damage, but breaking it down how it correlates with his actions really was a game-changer. Little to no executive function means he doesn't understand the future consequences of his actions. Impulse control is self-explanatory. Combine these and you get the child who grabs and throws down lamps and has no idea why its wrong or that the consequence is broken glass and possible harm to his body, with the fact that he doesn't realize he's swiping the lamp in the first place because he can't control his impulses.
It was like a light bulb went off in my brain.
"For his safety, the safety of little sister here, and the sanity of you and your husband, I recommend a psychiatrist who can prescribe a medication to help with the impulse control."
Stomach that one.
The psychiatrist was an older practitioner, of course. It is so not comforting when your child stumps a professional. So.not. We agreed on a medication to trial. Turns out, this was a triple threat medication. It would help his impulse control, decrease aggression, and help with sleep. Hallelujah.
As we trialed this new medicine, we asked for a change in AJ's school staffing. I know what your thinking. It was beyond necessary.
This medicine?
Gave me my son back.
AJ stopped running around like a maniac, his aggression disappeared, and he began to sleep. As in restful, non-broken, sleep. He started wearing his implants LIKE.a.BOSS. He started learning again. His body calmed. He enjoyed and absorbed the much-needed sensory regulation he was being offered. He enjoyed himself at school. He enjoyed himself at home. He started playing with his sister.
I had a good bawling session last week as we closed out the school year. For AJ, it was sincerely the beginning.
This year rocked me to my core. Which, for all we've been through as a family, is kinda hard to do. I'm not gonna lie. The challenge of splitting myself between AJ's needs and Mimi's needs has been beyond overwhelming and stretched me to my thinnest. I have prayed many prayers and wondered what God's thinking about all this. I don't know what I'm doing, dude. Seriously.
AJ struggles this year caused us to pull back from friendships, cancel plans constantly and most of the time last minute, and in general...live minute by minute. I've hated that. You can prepare for anything, but that anything is going to look however its going to look when it gets here and you don't have control over that. We prepared as well as we could to parent two children, our two children, but nothing could have prepared me for the avalanche that has been AJ over the last year.
I missed my sweet boy. His smile lights my world. To not see that for months completely broke me. To not be able to make him feel better, killed me. Clearly, as relayed above, we know AJ best. When you hold that invisible ability and responsibility and can't figure out what is going on? Well, it breaks your heart and makes you feel helpless.
Am I holding my breath a little? Yes. We've been in this constant state of whiplash. Am I afraid we'll have to increase meds? Yes. Am I worried when he has a bad night of sleep that we're back to the old patterns? Yep. We're just going to have to take this one minute at a time. I do believe this is the new normal for all things AJ.
A fellow Bulgaria Momma recently posted this in an adoption group we are part of. I asked her if I could share:
For over a year AJ had been illustrating extremely difficulty sleeping. Despite my internal battle, trying everything under the sun, and my clear disdain for the idea, we began a mild medication to help AJ sleep.
I began to hear mild whispers about his behavior at school. This was a main concern for both us and the school team. After discussing with our pediatrician, we had AJ evaluated for the second time for autism. The entire appointment was beyond ridiculous. They had absolutely no idea how to test our child. Let me say, that we are not fans of older practitioners. We left, with the information that our son has "autistic tendencies" but not the actual diagnosis. We were also told that he would never improve, what we were seeing was about it. Don't get your hopes up. Annnnnnd that's when we knew it was over. When we begged for help with behaviors, they referred us to other older practitioners in the area of behavior who had waiting lists out the ying-yang. We were not disappointed in the lack of diagnosis, but rather with the lack of professionalism and knowledge as to how to test our son.
It was a waste of time.
At the end of October we passed family court in Bulgaria and legally became Mimi's parents. We flew out at the end of November to pick her up. AJ did marvelously well during our first trip to visit her back in July 2014, so we were psyched knowing he'd do well again.
For many reasons, those two weeks in Bulgaria were the longest weeks in my life. AJ did not do well. In fact, it was terrible. He was completely non-functional. He did not attend school, he did not wear his cochlear implants, he did not eat, he did not want to do anything but roll in his bed. Nothing in my binder of preparedness for my mother-in-law was going to help this little boy. When we would Skype, I would watch him sinking farther and farther into this weird abyss. He was not my son. I was concerned for his health and concerned for his heart. Being thousands and thousands of miles from him and trying to be a mom to a new child was beyond what I could handle.
Our first night back home AJ crawled into bed with me, got as close as he could and fell asleep. He didn't move all night.
In the seven years we have had him home, he has NEVER done that. Ever.
His behaviors continued to escalate and he began to expression extreme aggression toward his new sister. Now, we were prepared for regression on his part, jealousy, and all that good stuff, but this-
was not normal.
We decided to see a psychologist with primary practice in the adoption world. After an hour phone conversation, she understood my son more than anyone else we have ever come in contact with. She agreed to try and help with the behaviors (if you haven't guessed by now AJ is very complex). I learned about AJ having sensory memories of his own past as an orphan and how to replace those with good memories. I learned how his relationship with food is so multi-faceted it makes my head spin. When we saw her, I was in tears THANKFUL he displayed his behaviors in her office. Thankful she could see what I had relayed in previous conversations.
At this point, AJ had barely worn his cochlear implants in months. He could not deal. He was very aggressive, and moving non-stop. He would walk through the house and swipe things from all surfaces. He could not sit down and be still. Sometimes I felt like he had no idea what he was doing. Not a clue. His sleeping had become far and few between again-even with the medication. He was still lashing out at Mimi and we were needing to monitor their interactions closely. So much for positive bonding. He was depressed. We tried oils, creams, no-screen time, we've always had a strict bedtime routine so we continued that, we did EVERYTHING we could think of to help him. And it wasn't WORKING!
So many questions asked. What if we put something in his hands, is he more apt to keep them busy and not go for his implants. Does he like hair, is he reaching for a sensory need? What is he trying to tell us. Behavior is a form of communication. Behavior charting and tracking was started in the school environment. AJ was no longer accessing his education because he was not HEARING. You cannot access your education as a cochlear implant user if you are not wearing your implants. He was isolated. In addition to his environmental and staff changes at school, his programming had shifted into a bad, bad gear. His education was taking a complete nose-dive.
We researched and requested he be sent to a specific school for special needs children.
I observed AJ in his school environment for one entire day.
While I can't go into detail, I will say:
It was 800 shades of WRONG.
Things were already in motion due to our request above, but this sealed the deal. AJ hated going to school. This is NOT my child. The day he cried getting out of the car? Broke me. Continuous meetings, correspondence, and more things going around and around in circles started cycling.
AJ began a cycle of sickness, sick almost every two weeks on the dot. Broken sleep and sickness mean more seizures and dis-regulation. On top of everything else that was happening, it was beyond what we could bear.
So here's what I learned:
AJ has frontal lobe damage.
Thus, he has very little to no executive function and no impulse control.
Well, HELLOOOOOOOOOO.
That makes TOTAL sense.
We knew he had frontal lobe damage, but breaking it down how it correlates with his actions really was a game-changer. Little to no executive function means he doesn't understand the future consequences of his actions. Impulse control is self-explanatory. Combine these and you get the child who grabs and throws down lamps and has no idea why its wrong or that the consequence is broken glass and possible harm to his body, with the fact that he doesn't realize he's swiping the lamp in the first place because he can't control his impulses.
It was like a light bulb went off in my brain.
"For his safety, the safety of little sister here, and the sanity of you and your husband, I recommend a psychiatrist who can prescribe a medication to help with the impulse control."
Stomach that one.
The psychiatrist was an older practitioner, of course. It is so not comforting when your child stumps a professional. So.not. We agreed on a medication to trial. Turns out, this was a triple threat medication. It would help his impulse control, decrease aggression, and help with sleep. Hallelujah.
As we trialed this new medicine, we asked for a change in AJ's school staffing. I know what your thinking. It was beyond necessary.
This medicine?
Gave me my son back.
AJ stopped running around like a maniac, his aggression disappeared, and he began to sleep. As in restful, non-broken, sleep. He started wearing his implants LIKE.a.BOSS. He started learning again. His body calmed. He enjoyed and absorbed the much-needed sensory regulation he was being offered. He enjoyed himself at school. He enjoyed himself at home. He started playing with his sister.
I had a good bawling session last week as we closed out the school year. For AJ, it was sincerely the beginning.
This year rocked me to my core. Which, for all we've been through as a family, is kinda hard to do. I'm not gonna lie. The challenge of splitting myself between AJ's needs and Mimi's needs has been beyond overwhelming and stretched me to my thinnest. I have prayed many prayers and wondered what God's thinking about all this. I don't know what I'm doing, dude. Seriously.
AJ struggles this year caused us to pull back from friendships, cancel plans constantly and most of the time last minute, and in general...live minute by minute. I've hated that. You can prepare for anything, but that anything is going to look however its going to look when it gets here and you don't have control over that. We prepared as well as we could to parent two children, our two children, but nothing could have prepared me for the avalanche that has been AJ over the last year.
I missed my sweet boy. His smile lights my world. To not see that for months completely broke me. To not be able to make him feel better, killed me. Clearly, as relayed above, we know AJ best. When you hold that invisible ability and responsibility and can't figure out what is going on? Well, it breaks your heart and makes you feel helpless.
Am I holding my breath a little? Yes. We've been in this constant state of whiplash. Am I afraid we'll have to increase meds? Yes. Am I worried when he has a bad night of sleep that we're back to the old patterns? Yep. We're just going to have to take this one minute at a time. I do believe this is the new normal for all things AJ.
A fellow Bulgaria Momma recently posted this in an adoption group we are part of. I asked her if I could share:
We often assume because we are doing what God has called us to do, He will make the road easy. I have learned my greatest lessons in times of difficulty and waiting.
It is hard, but God has a purpose in it.
"Hope deferred makes the heart sick; but when dreams come true at last, there is life and joy." Proverbs 13:12
Amen.
