The Thin Line

 Most of us with special needs children walk a thin line. We want to desperately show the world how beautiful our children are. We also have to get them the help they need. We have to advocate for them. I often will be on the side of positive statements about my children. I absolutely fundamentally think that without them I’d be a completely different person. A person whom I would not like very much. Can you a imagine someone that comes into your life and completely changes you? I know of two ways this happens. One you finally come face to face with God. Two you are given a special needs individual. Believe me this happens quite often. This is why I tend to be positive because I happen to have a positive view on my life. I happen to feel like I was given a blessing. 

  My children struggle especially during this time. We have had such a hard time this year. I could write an entire book of what went wrong in 2020. It wasn’t necessary the normal thing that everyone else was dealing with. You see because our family is not normal. We spend the first half of the year struggling with medical problems and hospital stays. Then the rest of the world caught up with us. 2020 happened for everyone else. We already started the year that shall not be named before it even came to pass. Right after we were locked up in the hospital we had to be locked up in the house. Leah began her mental decline. We were unable to do the distance learning. There was no provision for children like mine. My oldest can’t do the video teaching. She is scared of FaceTime, always has been. Zoom was out of question. Leah has always had issues focusing in school anyway. It took an army to maintain her during a day. Here we are trying to educate. Impossible. I’m still to this day struggling to figure out how? We have therapies that I take them to. Some are on video, most are in person now. We have 8 in total. How? Leah is barely functioning. You want to know what the real deal is? I just need their routine back. They need to have in person teaching. I want them to learn math, science, reading, spelling english. All the things that a person needs to know. They can learn these things. They need help. I can’t get it. I’m going to try but I’m exhausted. Emotionally and physically exhausted. The work it will take to get them in person. 

Inclusion, diversity words that are used a lot recently. Visions of what those mean come to you I imagine. They are different for me. I include the special needs community. We don’t include them. Alas, they are set aside. It will be okay they can wait. No, actually they cannot. They are desperate. We are distracted. We are squabbling over what? Special needs community can’t access things. Can you? Do you have access to a job? Do you have access to vote? Some in our special needs community can’t do that. Did you know? Can you independently go out of your house without some one else? Are you allowed to participate in an activity without having to fill out a ridiculous amount of paperwork? How about a diploma? Access to college? I can go on all day. You my friend are included, have access to freedom. Take advantage of it. Do me a favor? Right now thousands in the special needs community don’t have access. I fight everyday. Every single day I don’t lose focus. Can you maybe think of us in your inclusion? In the diversity we hold very dear. My children are worth every single bit of effort. I would know. It’s not because I’m their mother. It’s because in them I see the very key to humanity. I fight because I don’t take that lightly. I would gladly lay my life down for it. For those that asked the question which I find very appalling. In any case many special needs parents get asked.  If you knew would you have aborted? I think you have my answer. 

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.

Complexity: A Special Needs Parent Crisis

  We all have them as special needs parents. We can't avoid them. A crisis. I'm not talking about our everyday chaos that we endure but the abnormal disruption. Recently I have been dealing with my youngest not wanting to go to the bathroom. This is a difference between being constipated and refusing to go. She is actually quite anxious about it. We have to do certain things as humans. That would be one of them. Of course being the person that she is, has no understanding of that. All she knows is that she is terrified of the function. That has put a stop to that. Let me explain something to you about anxiety.
  Anxiety in a normal amount will cause a person to hesitate. We will become fearful of a certain task. Perhaps it is speaking in front of a large group of people. Maybe meeting a special person for the first time. You are really nervous. Sometimes you might cancel. You might feel bad about it but facing the said event was too much. Most of us are able to push through this emotion and deal with the fear. Some of us, like me have very little of it. Irony, I'm writing about it come to think of it. Then there are those who are stuck in it. It grabs a hold of them with an iron grip. The thought of completing the task is far greater than the pain of where they are at; which is completely stuck. My daughter has a mood disorder so any emotion is experienced at a greater capacity than I could possibly fathom. That would also include anxiety. So begins the process of why she is stuck.
  Leah has always had issues in this area. We have had her in to GI specialists. She is also on routine medicine to keep things easier for her. She is a very selective eater. We try and get as much fiber in her diet as we can. We also have fiber supplements that we have added. We have consulted her therapist about her anxiety on the issue. However, in December we hit a road block. She absolutely decided she was done going to the bathroom. In the weeks that followed we tried multiple things that would help. That should have helped a normal person. However, Leah was not going to go. I went to the clinic and explained rather thoroughly, I thought, what was happening. They tried to explain to Leah that she needed to go to the bathroom. That was no help. Then I went to the ER. At this point Leah is vomiting because it has to go somewhere. Her appetite has decreased. She is extremely moody as you can imagine. I had said the same thing in the ER. They took an X-Ray. She doesn't have a blockage so she should be able to go on her own. How frustrating. She isn't going on her own that was the point. She at this point was missing multiple days of school because she was throwing up. She was sick. I couldn't get help. I had a very anxious husband. I was consumed myself trying to will her to just go to the bathroom. I finally was able to get an emergency appointment at our specialty hospital here in the area. We were still trying different methods at home to no avail. When we went in someone finally understood what I was saying. Knew my problem. They admitted Leah to the hospital a couple of days later for a flush. It was a new thing they do. Instead of an enema they use a tube in the nose that goes in the stomach. Same results I will tell you that.
  We went into the hospital. I was hoping that this would help her anxiety once she realized that it getting unstuck is better. When we found out that she was very close to extreme danger I was angry. She was close to getting in a very sick situation. I went in several times for help and did not get it. I was very lucky that we had a specialized hospital in the area who was willing to do what needed to be done. She was in the hospital for nearly 3 days. It was hard to watch her fight at first. Then the anxiety slowly melt from her. She was able to go on her own. We left the hospital with a hope that our crisis was over. We didn't realize that we were still in the middle of it.
   We had a couple of weeks of happiness. It was nice. We were enjoying the holidays. We had to recover from the episode that we experienced. I also had to catch up on a lot of things that were left undone because of concentrating on the crisis. My husband was back to his old self. He was really stressed due to not knowing how to help. I realized I missed him because it felt like we were going in opposite directions. We have different ways we deal with stress. If I am honest with myself, I run ragged. I try everything I can to fix. There was no way I could fix this on my own. My husband usually goes inside himself a bit. Then Leah starts throwing up.
   Leah also deals with cyclic vomiting syndrome. She has had this since she was about 3. We thought it was stomach flu at first. It turns out that she starts throwing up and can't stop. Now it is a little bit under control. She will just throw up in the morning and be fine. We give her medicine to help with it. She starting throwing up every morning for a week. This was concerning. She missed a day of school again. Appetite down again. Then she was back to not going to the bathroom. We were not terribly concerned about that. She was throwing up. However, it was days later and knew that she needed to go. We went to the ER again for the vomiting. We were concerned about dehydration at this point. She was given the same medicine we have at home. She was sent home. I'm really frustrated at this point. The ER nurse calls the next day. I don't miss a beat. I said yeah she is still vomiting but I got the medicine here so I guess. I was snappish I'm not going to lie. I am not usually like that but I was so done. She is vomiting and not going to the bathroom. I knew if on Sunday she vomiting she needed fluids and nobody was going to stop her from getting them. I. Had. It. The cycle had broke though so I was thankful for that. I was hoping along with that she would able to go to the bathroom. It wasn't in the cards for me though. We went another long half a week struggling to try methods at home. I called it in and by Friday we were in the hospital again.
   The emotional roller coaster I found myself finally came to a down hill crash. I was in the hospital on the second day. I was fine. I called my husband and asked to have him bring Sharon to see me. I don't go without seeing my children you see. EVER. I only had one time where I spent 3 days away and that was it. However, the weather is bad. Our other car is not good. He decided it wasn't a good idea to venture the 30 minutes to the hospital. I cried. I never cry. I was very distraught. He knew that I don't do very good if I don't see Sharon. We had Facetime later but I was anxious for my Sharon hugs. The hospital visit was very intensive. We had to get IV fluids because she was dehydrated. They were stuck on the flush dial because she would throw up any higher. It was a long process. Even though she was not as serious as last time it took just as long. We finally get home nearly 3 days later.
   I don't know if we are still in a mode of this crisis. I do know that I have to trust that eventually we will overcome it. I trust in the mist of it that we are to learn from it. I am a faithful person. I believe that God is here through all of it. Leading the way to a better understanding of my daughter. I know I don't have all the answers. I have more appointments this week. We have a lot to figure out. We have our ups. We have our downs. Then we have this.
  I have updated people on social media about going to the hospital. It might of seemed all of a sudden maybe. Drastic perhaps. However, in a special needs household there is a lot of inner workings that happen before these measures happen. I did a lot of things before eventually succumbing to the fact that I needed to take Leah to the hospital. The second trip was fool me once shame on you, fool me twice shame on me type of thing. I don't chance her health. Especially when you already have the outcome laid out in front of you.
  In a household like mine we need to be prepared. Many other families out there like mine. Learning a language that no one speaks except your child. We go through things like sensing when seizures are going to happen. When we are close to a mental break down. When it is the absolute best time to leave a public place before things implode. It takes a lot of practice. However, over time we become experts. We don't do it because we are paid. We do it because there isn't a choice for us. We do it because our love ones depend on us for their needs. We are their protectors, advocates, caregivers and parents. What do we get in return? Absolutely everything that is valuable in this world. ~Kandi