This is Bubba (nickname) I am keeping my children’s names out of it for privacy reasons. So please if you know us respect this rule. Thank you 🙂
I would like to say if you start this post please read til the end, it’s not all bad just some history.
This little man is my oldest, he is almost 9, (geez, I can’t believe it!) Anyways, we have been through a lot together, both him and I, but also as a family. I bet just from looking at him you wouldn’t know he is SN (special needs) Amazing but he is. What we didn’t know was up until now he has Schizophrenia & OPD (other psychotic disorder), Depressive Disorder, ADHD (Attention Deficit Hyperactivity Disorder), ODD (Oppositonal Defiant Disorder), as well as Anxiety. This kid is one of the strongest I have seen in a while and I have met a lot of NT (neuro-typical) kids and SN kids. I say this because through everything he still tries to have a positive outlook on life (something I struggle with daily).
Since 2013 he has been through 12 hospitalizations, 2 of which are residential. Am I bragging? HELL NO! I wouldn’t wish this on anyone including my enemies, *which I have a lot of apparently* He tries, and tries whether it’s pleasing people or loving random people. When I want to give up I tell myself I can’t even for him, when you have doctor after doctor telling you this is one of the most complex cases they have seen in a while that light at the end of the tunnel dims.
Bubba was DX (diagnosed) with ADHD at the age of 2, (yes I know that sounds bad) he went from taking naps to staying awake all the time, sneaking/wandering away from us, and this kid never knew a stranger in his life and still doesn’t. When my husband and I got married in 2009 we moved away from home for his job. This is when things went a little downhill, he was still doing the staying awake for hours/days on end and then would finally crash. We tried everything, it got worse and he became destructive and started SIB (self injury behavior). I took him to the doctor and they referred us to a specialist as well as psychologist, and psychiatrist. The psychiatrist was a JOKE! Literally, he would give us a medicine for Bubba and either two weeks or week he would switch, we never knew what was helping. I was young and stupid and had just been thrown this curve ball of chaos, we all make mistakes but you live and learn right? (It took me a while)
Fast forward to 2012 when we had moved (yet again) we took Bubba to a Devo Peds (developmental pediatrician) after doing some testing and questions and hours of paperwork the Dr. came back with a DX of Autism. Jaw dropping, glass shattering news for us, we never expected this, we knew something was going on but never expected that. From there we were left empty handed with no resources and basically on our own. I reached out to what people and resources I could and researched every DX that had given Bubba. We went back every so often to the Devo Peds Dr, finally I was at my wits end and he had suggested ABA (Applied Behavior Analysis) therapy. I started calling different companies and finally found one that accepted us and had room for us. Bubba and I worked with this company for about 4-6 months, it was NOTHING like I was told from other parents, table work (aka “homework”) is all they did 2 hours a night 2 days a week, that’s 4 hours a week! This is a child who had meltdowns for hours just us trying to get him to do school work. After meetings and nothing improving we fired them and went back to the Dr.
This is where I was fuming and by the end of the appointment wanted to burn half a city down, the Dr proceeds to tell me ABA might not be what he needs. WAIT!?!?!?! What???? You are telling me this months later, $200 later!!!! Needless to say I was seeing red and the Dr was scared from the look on my face. I was completely lost, here we had wasted time, money and energy on a therapy that wouldn’t help him. We already had Speech and OT (occupational therapy) which was slowing helping.
In 2013, Bubba was hospitalized for the first time, the feeling that day was horrible. When it was all said and done I wanted to talk to nobody and I mean NOBODY. I didn’t cry, I didn’t break…..NOTHING…….Am I a horrible being? Maybe or maybe not, only people that have been through it can say yes or no. Yet even then every situation is different. That was the beginning of a long and on going journey for all of us. This hospital got him stabilized and he was sent home, we tried to help, its not always easy when even you don’t understand what is going on with your child.
In January of 2014 we found out we were pregnant with #3. Mind you we find out when Bubba went into the hospital for a procedure, yeah that was fun…..NOT! From there it seemed to get worse, a lot of you will say well he didn’t like having another sibling…..Maybe, but he didn’t even acknowledge this baby for the longest time. In April after my husband had left for his job, I had taken Bubba in to see his psych Dr because he had decided to pull a knife on me and threatened to kill his sister (in graphic detail) so an emergency trip happened. The Dr decided, “Oh! we just need to up his medicine……” If only looks could burn and kill……..Right??? Anyways we go on, finally I got fed up with Dr, teachers, therapists and so on not believing me. When he ran out of one of his meds, I took him completely off. Bad idea? Maybe…..ok well yeah life became hell, but it got my point across. The very first day within less than an hour at school the teacher calls me. This went on for a week, bad reports from school daily, meltdowns for hours from hell, yet we endured it to prove our point. WE NEEDED HELP and we needed the right medicine.
I had to take him to the ER a couple of times, after sitting in a completely empty room, with a screaming meltdown child, for hours they finally decided to admit him to the children’s ward until they could find a bed. This took 3 days and finally he was going to be sent to a residential hospital. He would be close but not at home. So I made the drive to this place for a tour, while he was in an acute care hospital and this was when I was told he was approved by insurance to be placed there. I transported him a day after he got out, not even home for 24 hours. We drove up and spent hours doing intake, this was the longest I ever had to do this, and I was doing it alone. The empty feeling I had was harder than anything before, when everything was said and done we went to his room and we put everything away and then I would leave, we sat on the couch and it was at that moment he broke. When I looked at him and saw tears in his eyes, I broke too. I couldn’t look at him without crying, I kept telling myself I had to be strong for him and to not cry. Yep that didn’t happen, by the time I was out the door I was a wreck. I then left and traveled back.
Bubba was at RTC (residential treatment center) for 119 days. When he was finally released and able to come home he lasted less than 30 days at home before going back in to the hospital for Acute Care. This went on for months until the end of Jan 2015, when he was yet again admitted to a RTC, this time I had hope! I felt comfortable with this staff and believed my son would be in good hands. I was right, we have been making progress, hit some bumps in the road but still traveling.
My son, even though the above may seem all bad had good days, he has a heart, he has some much love, and is so brilliant I can’t even begin to explain it.
He is amazing with electronics, loves reading, and is an astounding problem solver! His way of thinking is just so profound it’s mind blowing. I always tell people he is like a computer just hardwired backwards, his brain runs faster than his mouth sometimes so this is why it is hard for him to talk and get things out. He gets frustrated but he will try his best.
I love this kid to death and even through all my mistakes he still loves me. I haven’t always been the greatest for him but I try and I will keep fighting for him no matter what!
Thanks for reading this very long post. If you made it through I applaud you 🙂
Signing off for tonight!