A Special Needs Mom With Special Needs

This is day 14 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, we are moving onto the next section of the series, focusing on special families in special circumstances, and hearing from my brother’s girlfriend, Melissa, as she shares what being a special needs mom means to her.

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When Aprille asked me to write this entry for her blog, I immediately thought to myself, “I have zero idea what to say.” I go through every single day moment to moment: making the best of every moment I have and surviving most of the moments in between. I don’t sit and think about it. Well that’s not entirely true. I obsess over how to fix it, deal with it, prevent it, etc. But I don’t really sit down and analyze what it all means to be me and to do that. I have decent writing skills, but I tend to write poetry, or short stories – things that I can write from an outsiders perspective. I have a hard time collecting my thoughts in any order to actually put them into something other than a ramble when I am writing from my own perspective.

I not only am a Special Needs mom, I am a mom with Special Needs.

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I have Aspergers, OCD, ADHD, PTSD, Anxiety Disorder, PCOS and Fibromyalgia, or as I like to affectionately refer to it: Alphabet Soup Disorder lol. My daughter has a rather severe case of BiPolar disorder and OCD, and we strongly believe she is also Aspergers, though we are still in the evaluation process for that. (But I have seen all the signs.)

So needless to say we are a house full of issues, and it’s never quite boring around here to say the least. A day in my life is full of anxiety, overstimulation, heartbreak for my child’s pain. There can also be joy, pride in my child’s abilities, and laughter. The emotions are unending. Many people believe Aspies don’t feel emotions or that we’re cold. The truth is we feel them so absolutely intensely we don’t really know how to explain it in words, as words just don’t exist for that feeling. Imagine feeling that way at 7 years old when emotions are a new mystery to solve as it is! We also have a hard time handling other people’s emotions because they are too intense to feel, and we don’t always understand why they are being felt. Which makes it hard for me to handle when my child is having a violent meltdown or tantrum.

That being said, I live every single day on guard to make sure I have done every single possible thing I can do to avoid a meltdown, violent tantrum, verbal abuse, and many of the other behaviors that come with having a BiPolar, OCD, Aspie child. I live with the guilt and gut wrenching sadness that my baby has fought so hard and gone through so much at the tender age of 7 years old. She has been hospitalized, she is taking 3 medications, and nothing hurts deeper than the moment she is just not strong enough anymore to hide her pain by lashing out at us, and she is a sobbing mess in my arms begging for it all to stop. This is my motivation to never give up, to be there for her, to take any measure I can to ensure that someday she finds relief.

I run a tight ship at home. Everything we do is at a scheduled time. This is necessary for all of us. If we are not in routine there is chaos. What is chaos? A child screaming that you are stupid and throwing a chair at you. Screaming at the top of her lungs and kicking doors, or kicking us. It is such a hard balance to love her through this and teach her at the same time that it’s not ok to act this way. It is a daily struggle to find that balance. So I keep the schedules tight, I make sure there is healthy food in the house instead of sugary junk, I take her to all the Dr’s appointments. I work with her teachers and her school to ensure that they are aware of her needs.

There have been days like today, where the school called me at 9:30 in the morning that my daughter had been having a crying meltdown at school for an hour and a half and I needed to bring her anxiety medication and calm her down. You’re probably reading all of this and thinking what a terrible life we must lead. But in all honesty there is just as much, to borrow a quote loosely, Beauty as there is Mess.

I get to spend my life with an amazing human being. She is brilliantly smart. She was tested at school and is in the 95th percentile for her grade. She is in 3rd grade, but only because she skipped Kindergarten. Her report card at the end of 2nd grade showed that she was advanced for her grade by 1 to 2 grade levels in 9 of 11 subjects. She is obessed with things like molecules and the universe. She’s also extremely passionate about dancing, horses, and drawing. She is inquisitive, passionate, and hilarious and has a heart of gold when she’s stable. And those are the times I cherish most.

I did not hear my child laugh genuinely for the first time until she was finally hospitalized and put on medication at the age of 6. Up till then she had mimicked laughter in a loud obnoxious way, and I never felt the joy. She laughs now because I never gave up. Every doctor that treated me like “The new mom who is over reacting” and didn’t take me seriously until she began to talk of suicide at the age of 5. I never gave up. I never stopped learning what can I do to make things better. How can her life bring her that joy and laughter I ache so much for her to experience more…

What it means to be a special needs mom is to breathe through the crisis, avoid the crisis, and cherish the small moments when there isn’t one. It means to love your child through everything they go through from night terrors, to medication side effects, to anger, sadness, depression, manic states, psychosis, laughter, joy, creativity, discovery, growth. And most importantly, it means to never stop learning ways to make things as much Beautiful as Messy. It’s your job to pick up the pieces and put them back together every single time. And when I look into her big brown eyes and she tells me, “You’re the best mom ever” as she hugs me tight, it makes every single moment of dread, exhaustion, lack of sleep, verbal and physical assault, fear, anxiety, guilt, sadness and desperation melt away.

You can do this. I do this. We have to do this And that’s why I never sat down to really think about it until now: I’ve just been busy doing it.

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Melissa is a fun-loving mom living on the west coast. She loves singing, working on her Life Coaching career, theoretical physics, coffee and has a serious book addiction. She adores being a mom despite all the challenges it brings and continues to strive to find a balance in all the chaos by living life by her favorite phrase, “Live, Laugh, Love.”