Puzzle Pieces: Multiple Diagnoses

   Last month I was dealing with Leah’s GI issues. This month we are dealing with her mood disorder due to the quarantine. Leah has multiple diagnoses. She has autism, ADHD, mood disorder, cyclic vomiting syndrome and chronic constipation. One of the last things that we figured out about Leah was her autism. Her ADHD and mood disorder was so pronounced those came first. Her medical issues were also tricky. She had originally had issues with low blood sugar. We thought she got stomach flu quite often. It was cyclic vomiting syndrome as it turned out. Many of my special needs parents with children of multiple diagnoses know how difficult it is to manage.
   When you have autism you have sensory, communication, sleep, routine rigidity and motor function  issues. A good number of autistic children have ADHD which would add attention, impulsive and inability to either slow down or the opposite could occur. Leah’s mood disorder is an inability to control her emotions. A typical person would be able to show happiness by a smile. Leah is dancing, jumping and singing when she is happy. This follows with every emotion. Leah is a very complex individual. How to approach what is causing a specific issue and dealing with it is one of toughest tasks.
    Our oldest has autism. Simple straight forward we know what is going to set her off. She will get upset over certain things. It’s great to have that comfortable knowledge. Sharon hates movie credits. We have no idea why. However, with her behavior she has communicated “no thank you”. She also likes to watch the same shows over and over. She knows when they end. Avoids the whole movie credit anxiety. She promptly 10 minutes before the ending requests to end the show. She is predictable. It’s fabulous. I didn’t realize how great this was until Leah came along. Leah is very unpredictable. We have no indications what will work for her any given day. It all depends on her mood. We have to work around the mood she is in. When Leah is angry it is very difficult. One of biggest struggles is her anger. She becomes impossibly impulsive, communication is cut off and is highly focused on staying angry.
   One of the things I realized when Leah was diagnosed with ADHD is we were missing something. She was diagnosed at 4. She clearly had ADHD. She was a hummingbird, always going. The reason I started drinking beloved coffee. We couldn’t keep her focused, and extremely impulsive. She had a temper the size of a Scottish Highlander. She was a little bitty but it would more than one to hold her down if she was angry or scared. I went back to neurophysiologist for more evaluation. Based on tested and observation they diagnosed her with mood disorder. She was also having receptive language. She had a hard time understanding half the things being said to her. Her language skills are through the roof. However, what she receives back is half that. She is also a very concrete and literal thinker. She cannot in any circumstances say anything other than how it is. Which is rather awkward sometimes. She will say exactly what is in her head. We were working with that for a couple of years. I knew that she was having trouble processing. We were having some cognitive processing issues with her. We could not get somethings to stick with her. Which didn’t make sense if all she had were ADHD and the mood disorder. I went back to the neurophysiologist. I explained that we were missing something here. We spent a couple of days at the office. She finally at the age of 9 was diagnosed with autism. I wasn't happy about having yet another diagnosis. However, it makes sense with her cognitive delay, concrete and literal thinking. She also doesn't have the receptive ability to sense or read people's emotions. She assumes that you are feeling how she feels. Every single person with autism is different. Sharon is receptive to other peoples emotions. It is all depends on where the brain pathways are going.
    Sometimes we have a breakdown in communication. This causes a behavioral issue. She will argue with me about how I have said something wrong. This actually happens a lot. The truth of the matter is we are both right. In my brain it would be correct. In her brain it can't be. I have to make it correct in her brain. This might lead to a meltdown. This is her autism. We also have her getting very emotional about not being able to do something. We are in a very hard situation. It is very difficult to get out. I have to deny requests a lot. She hates the word no. Most children do. However, her emotional response looks quite a bit different. She recently has been aggressive towards our cat. I naturally sent her to her room. She had an emotional response to that. She kicked a couple of holes in our wall. Two things here, aggressive towards the cat is probably the change in routine. A communication response. Kicking holes in my wall was emotional. So I gave her two very different consequences for her to learn from her actions.
   I had to think about what I was going to do. I had to process what was going on with her. Also what was my priority on how to escalated state. I realized that her over emotional response needed to be dealt with first. I reached out to my mental health resources. I realized we need to get into a better routine. We have had three appointments this week. We are hopeful with the consequences and reinforcement for good behavior, we will get on track. Leah looks like a typical individual but is anything but typical.
   I will often will get more comments about Sharon. The difficulty that I must face. I point out Leah and say she is my difficult one. They often give me the strangest look. Looks are very deceptive. May is coming up. It is mental health awareness month. There could be a person who seems to be perfectly fine. They might be slowly crumbling inside.
   Leah might be a puzzle. She is a challenge. However, I learn so much from her. She is absolutely the most intriguing person that I have privilege to love. She takes things in stride with her medical issues. Leah really changed a lot of my views on things. We are given paths in life. Leah on my path caused a multitude of blessings for me. I don't really enjoy putting together puzzles. It's actually quite frustrating to me. I, however, could bask in the complexity of Leah for a lifetime.

Victory came from a failure

Sharon, my oldest was 3 I failed her miserably. I did not know at the time that she was autistic. It would have been even been a year or so before I truly understood the impact of it. She was quite tall. She still is at age 12. We had her in a booster seat at the table. One day I decided to modify it. The legs come down and it then sat lower, allowing the bigger child to sit comfortably.  I did this in the middle of the day. When it came dinner time I was exhausted already. You can imagine in my case. I have an autistic child. My first child, have no idea that is the case. All I know is she is terrible at following instructions. She rarely listens to me. I know she is delayed at this point but that is about it. I remember this day vividly because I got extremely upset. I ask her to get in her seat. She just gets in front of the seat, where it normally is and stares. I instruct her again, get in your seat. She doesn’t do it. Here is the thing. I moved the seat down probably 3 inches. It was enough of a change for Sharon to think it wasn’t her seat. The seat that she was looking at was in the spot she normally sits at but that wasn’t her seat. I specifically told her to get in her seat. She couldn’t communicate this to me because she had no language at all. Probably maybe a 3 word sentence at this point.
    I was upset because this child was not doing what she was told. She was shaking her head at me. She was being stubborn from all I gathered. I was extremely frustrated. We were trying to get her in that seat for 20 minutes. She knew how to get in the seat. I wasn’t going to lift her up there. I was screaming mad. I slammed one of the other chairs down on the kitchen floor. Then my neighbor came  and yelled at me. Yelled at me for making such a racket. I lived in an upstairs apartment. I snapped out of my anger and realized I failed. I failed her. I apologized to the neighbor and to my daughter. I helped Sharon into her chair. As soon as she was in it she realized it was her chair. She smiled and was not confused anymore. I understood what had happened. I didn’t completely get it but that failure  caused many victories. I learned my lesson. Any time we got something new we made sure we eased Sharon into it. We put her new car seat in beside the one she was using and let her try it out before we just said here we are. Daddy got new glasses? We would save the old ones and switch back and forth and say see same Daddy.
    Here we are in a quarantine. We absolutely did not have time to ease our children into this change. You can imagine if changing a chair from 3inches would cause such a fuss what would this do? Of course, Sharon has adapted quite a bit. Let’s be honest here though, this has thrown everybody off. All the little things that we take for granted that had to be changed, they feel it. Every single inch. They don’t completely understand the concept of this virus. My children are very literal and concrete thinkers. All they understand and very focused on is their normal is gone. They feel very unsafe. That has nothing to do with the virus at all. This causes a lot of communication of behaviors. A lot of sensory seeking behavior. Things I haven’t seen in years. Their world has changed. Therefore, they have to make their sensory system, bodies, and minds adjust to the new reality. Is this insanely frustrating? Oh extremely. I sometimes get upset. I’m human and am not perfect. It is important to understand this. We are going to make mistakes. We are not going to have all the answers. In this time most likely their will be days where you felt like the worst parent in the world. You are not. They are learning more now then they ever did right now. Think about all the changes they have to process all at once?  This is huge. Even if they do not do any school work the amount of change process and coping skills they learning. The impact that will make in the future for another life event. They might actually be prepared. This is rough and totally unexpected. You might think over and over fail, big fat fail when they can’t get something done today. However, in the near future something they normally really struggle with will be gone. It will be nothing to them. This trench walk will give them victory. Climbing a huge mountain will always give you the greatest view. You can plant your flag on that.