Thursday, October 31, 2019

Down syndrome, drugs and depression and shame.

On this last day of Down syndrome awareness month, I have something I need to share. Writing is like therapy for me, and I need to get this all out in to the open so I can hopefully begin to heal. So that we can all begin to heal.

Jojo has been a hot mess since about age 2. At first, I just assumed he was very "spirited". Then I said "oh this is the terrible two's" and then "terrible three's". And when he was 4 and was still climbing on top of the table while trying to hang from the light fixture I just went with "hot mess". I assumed it was something he would grow out of as he got older.

In January of 2019 when Jojo was five I was at an Endocrine appointment with all 3 of my boys. Jojo spent the entire visit either turning the light that is used to view x-rays off and on and off an on, or turning the room lights off and on, or literally trying (and a couple of time succeeding) to leave the room at lightning speed. Imagine trying to carry on a conversation with a doctor in that room! This is why most of my conversations when Jojo is around are either very quick or don't ever actually happen.

In a lighthearted way, the doctor (who I LOVE) said "Have you ever thought of having him seen by Behavioral Health?". Those words changed me. In an instant I realized that Jojo's behaviors were not just due to him being a hot mess or "spirited" but possibly something else. Something that could be identified. Diagnosed. And treated. I realized that maybe things could get better. And I wanted that. I wanted things to get better for him and for me and for all of us. I realized that I very much needed things to get better because I was slowly but surely falling apart.

Our doctor said that she would make a referral to Behavioral Health, but that it may take a while to actually get in to see someone. She suggested that I give them a call to find out how long the wait would be so I would know what to expect. I called. That day. And 2 weeks later someone called me back. TWO WEEKS. The lady who called me sounded less than thrilled to be speaking with me and informed me that their next available appointment was in November. This was in January. So I said no thank you, assuming that there must be a better way. Parents who have a child with behaviors that warrant seeing a doctor who specializes in behaviors can't be expected to wait NINE MONTHS to get the help they need right? I mean, you literally can grow a human person in that amount of time. I assumed the place I called was just way too popular or understaffed or grumpy and that there must be a better option.

So I did my research, I asked other moms, I talked to our pediatrician and it turns out that there was no better option. This is apparently just how things go when you have a child with behavioral issues. And in my humble opinion that really just sucks.

I waited, and researched, and called, and begged and cried and eventually our doctor called with a possible option. I reached out to the psychologist she recommended and was thrilled to find out they could see us. In July. Which still really sucked but it sucked less than November so I made the appointment.

Let me pause here to give you a bit of insight into what we deal with on a daily basis with Jojo. He is in to EVERYTHING. If he is not supposed to have it, he wants it. I have gates in pretty much every doorway in my house and some type of locks on all interior doors. We have to keep Jojo confined mainly to the living room because that is the only room that is mostly fully Jojo proofed, which means the only things he can reach are the few toys that aren't in toy time-out due to him throwing them at someone in the kitchen, the couch, and a tv table that has literally nothing on it. I had to build a dutch door for my hallway because Jojo can't be around Zee without someone watching his every move due to the fact that he will take toys away from Zee, hit him, kick him and sit on his head. So when we are home, Zee is usually down the hall in the twins bedroom (where neither of them sleep) where he is safe from Jojo but I can still see and hear him over the half door and we can reach over from the other side to lock it and keep Jojo in the living room. I had to change out the deadbolt on our front door to one that has a key on both sides after Jojo figured out how to turn the old deadbolt and straight up left one day (we got him back quickly but still). So now we have a chain lock on the inside, we keep the deadbolt locked from the inside with a key we keep on a hook up high so he cant reach it (yet), and we have a key that stays in the lock on the outside so when one of us goes out we can just lock the door back rather than someone on the inside having to come behind us and lock the door. Side note: this is the system to keep Jojo IN. Luckily I have a Vivint Home Security system to keep the bad guys OUT. ;-)

If I am in the kitchen attempting to do all of the things and Jojo wants something he will stand at the gate and SCREAM "MOM!" with ever increasing volume and insistence until I stop what I am doing and get him whatever he wants. If I am sitting on the couch with him (as he has likely instructed me to do) and he needs something from the kitchen, I have to gather up my phone, the remote and any other items I might have with me because if I leave anything behind he will take and swiftly toss it either behind the couch or through the cat door and down the stairs. We cannot put ANYTHING down that he can reach. No drinks, phones, snacks, nothing is safe. Now that you have that mental picture let's move on.

Jojo does great at school. Partly because he thrives on structure and partly because I am not there. I am like his bad behavior trigger. We finished up round 1 of Kindergarten (he is on round 2 now) and  moved in to the summer. As with all summers, I had great big plans of all the adventures we would have and the fun things we would do together while keeping Jojo busy and hopefully worn out. However, as with all summers, nothing went as planned. The big kids just wanted to either hang out with friends or chill at home. Zee doesn't walk yet and weighs 1,000 pounds so taking Jojo and Zee almost anywhere by myself is practically impossible. He legit needs a body guard to have eyes on him at all times. This resulted in us spending the majority of the summer at home, with no structure and my sanity slowly slipping away.

I called the psychologist office one day and told the secretary that I was at my wits literal end and that if someone cancelled an appointment to PLEASE call me and we would come straight there no matter the circumstances. Praise the Lord someone cancelled and we got our appointment moved up to mid June.

I had high hopes for this appointment, obviously. I needed answers and I needed help and I needed it right then. The doctor saw us and Jojo moved quickly around his desk rearranging computer cords and organizing the doctors cough drops into rows as we talked. The doctor told me that Jojo now had a diagnosis of ADHD, ODD (Oppositional Defiant Disorder) and OCD. Then he informed me that it was their policy not to give any medications until the child had completed 6 months of therapy. I'm not going to lie I was hoping and praying for drugs. I was crushed but still determined so we made our first therapy appointment for the following week.

Ella came with me to this appointment because she is awesome and back up is always good. We were called into a conference room with a big table in the middle and a small box of toys in the corner which was not at all what I had pictured but I decided to trust the process. The process however was not to be trusted. Jojo set out to dumping out all of the toys (not to play with them just to dump them), attempting to pull the curtains from the windows, standing on the table and trying to leave the room. The therapist (who looked a lot like Donna from Parks and Rec now that I think about it) looked stunned and she was clearly not sure what to do with her words or her hands. She said that she had "never worked with a child with Down syndrome before" at which time I pointed to Zee (who was happily playing with something random under the table) and said "this is a child with Down syndrome". Then I pointed to Jojo who was running around the room like a spider monkey on crack and said "this is NOT Down syndrome". Yes, Jojo has Down syndrome, but that is clearly not why we were there. She went on to tell me that with a "typical" 6 year old with behavior issues she would have them sit down and talk about how they feel and how to deal with their feelings and I went on to tell her that that was never going to happen. We agreed that this wasn't going to do anyone any good and could possibly be the end of their conference room and she promised she would try to find a better option for us.

She did try, but unfortunately the better option was the same place I had already called back in January and had also since filled out all of the paperwork for and hand delivered it to their office whilst begging for their mercy since they had still not called me back. Sidenote: whilst is a great and under-used word. Also, as of today they have STILL NOT CALLED ME BACK. So, we were back to square one and I was running out of patience. I called the psychologists office back and begged for help. There must be somewhere else we could go, a medication we could try, something.They said they would try to find a place that offered ABA therapy that could take us, but guess what? Same place we were already waiting on. So after much begging they sent a "medication referral" to a psychiatrist.

While we were waiting for a call back to schedule that appointment (which took a couple more months) we went back to our pediatrician. I told her that the psychologist FINALLY saw us but basically gave us a hand full of diagnosis and absolutely no help in dealing with them. I begged her to start him on a low dose of a common ADHD med while we waited for the psychiatrist appointment and since he was again acting like a spider monkey on crack she agreed.

I felt such a HUGE relief because after 7 months of nothing I finally had something. And I knew plenty of fellow Ds mamas who's kids were on the same med and it had worked great for them so I just knew it would be the answer for us as well. It wasn't. It made him worse. And so did the next med we tried. And all of this happened just as school was starting back and I was terrified that he was going to acting like a nut job at school which was the ONLY place where he actually behaved.

We finally got in to see the psychiatrist who promptly un-diagnosed him with OCD and re-diagnosed him as high functioning on the autism spectrum. She explained that his need to have groups of things that are alike and move them from one place to another was a characteristic of autism whereas with OCD you have to make sure things are in groups etc or else you feel like something bad is going to happen. Did hearing autism feel like a punch in the gut for a second? Yes. Did it change anything at all? No. I didn't really care what she said or what she diagnosed him with as long as she gave us help.

So, she started him on a cocktail of meds, one of which is an anti-psychotic which totally freaked me out at first but again I didn't really care what she gave us as long as whatever she suggested actually helped.

Today, we are a couple of months into what I can only call "figuring this out by trial and error". He is verbal, but not enough to say "mom these meds make me feel super tired" or "mom I feel like I don't want to eat anything". And that is hard. But we forge on. With the help of his teachers at school and doctors we are working to adjust meds, add meds, remove meds and so on until we all collectively feel like he is in a better place. He has had days when he wasn't doing so well at school and that let me know that something was off. He still acts like a fool at home most of the time. They say kids save their worst behaviors for the ones they love the most and if that is true he loves the absolute crap out of me. I have had days of extreme guilt when the enemy tells me that I am the problem. He behaves so well at school and he acts like an angel when he is with Papa so I must be the problem, and I have to fight against that voice every day.

Why tell you this story? I have a few reasons:

1. I am sure there is someone out there who has dealt with, or will deal with something similar. Knowing you are not alone, although it often (very often) feels that way, will hopefully give another family the confidence they need to fight this fight for their child.

2. Something must change. I have no idea how things are in other States (please let me know if you have experience), but here in Alabama the system for kids with behavioral challenges and mental health issues SUCKS. If a child is diagnosed with cancer or pneumonia or a simple thyroid issue, they are almost immediately started on medications and treatments to begin to solve or at least lessen the effects of their illness. It appears that the current answer for all things mental and behavioral health is being added to a waiting list that may go on until Jesus comes back and that is just not good enough. We can and must do better.

3. When I first brought Jojo's behaviors to light in a couple of Down syndrome Facebook groups, I had multiple mom friends who private messaged me and said something along the lines of "Johnny has been on {INSERT NAME OF DRUG HERE} for forever and it has really helped us but I didn't want to say that in the group because I would get mom-shamed by all the crunchy granola oil loving mamas". Hear me here people: I know not one mama who has a child with cancer who would every hesitate to post on Facebook or Instagram or shout from the proverbial rooftops when their child has been approved for a medicine or treatment that could ultimately save their child's life. THIS SHOULD BE NO DIFFERENT.

Bottom line: the shame and stigma surrounding mental health issues must change. I have personally been on anxiety meds for basically forever and now due to SEE ABOVE I am on an anti-depressant as well. Why should that be a big deal? If I broke my leg and had to have surgery I would never feel the need to whisper to a friend that I was on meds for the unbearable physical pain, so why should unbearable mental and emotional pain be any different?

People die due to mental illness y'all. We can't continue acting like that is not the case. So please friends, be bold. Share your stories. I feel that is the only way that we can conquer the stigma and shame.

And if you need help, or your child needs help, get it. No matter how hard long you have to fight. You are worth it. Our kids are worth it.

I would choose Jojo a million times again even knowing what I know now. I firmly believe that God gives us the kids that are meant to be ours, no matter how they come to be ours. Zee has a whole host of medical issues that I battle with zero shame or concern for what anyone might think of me and Jojo's issues should be treated the same way. I love him with every fiber of my being and I always will. He is bossy but he often bosses me to rub his hands or feet when he is sleepy and that melts my heart every time. He says "Da!" instead of yes (I think someone taught him German I am telling y'all he has always been advanced) and I love that. He sleeps in the bed with me every night and I think I will never get married again for the sole purpose of being able to snuggle him every night for all of my days because gosh he is adorable and sweet when he is asleep.

God knew what He was doing when he picked me to be his mama, because He knows how much I love a good fight. ;-)