Jessica joins aspergers101 team of writers as a single mother of two extraordinary children who believes that all children deserve the love and acceptance that they give out. Follow Jessica in the Family section of aspergers101 and share in her personal stories as she will cry and laugh her way through life. Jessica blogs regularly on her site, My Extraordinary Child, a place where parenting is discussed, tears and sarcasm come to meet, and differences are celebrated. “Unless the world stops limiting opportunities for people of all abilities, I never will. Join me on a journey of tears, laughter, and courage”. -Jessica Nieminski
This blog by Jessica Nieminski is one that I love to re-post every so often. For most families, it’s reality…a child diagnosed with autism who deservingly requires special guidance and extra attention. However, what happens to the neurotypical sibling(s)? Oftentimes they grow up either an ambassador for those with disabilities or they are full of regret for the attention they did not receive. It’s an almost impossible balancing act for sure. A special homage to the siblings. -Jennifer Allen/Aspergers101
There are so many moments in life that are filled with such amazing joy, and there are those that cause worry in the back of your mind. The kind that keeps you up at night and causes a pain deeper than you knew pain could go. While both of my children are my world, this is a letter to my 4-year-old daughter about her life, and how having a sibling with ASD affects her:
I see the look on your face when the day has stopped once again to tend to the same thing. The confusion I know you feel about the differences between yourself and your brother are very much real.
The day you become a parent changes everything and there will always have to be a give and take to find the balance that our souls so desperately crave. The problem lies in the fact that for many of us, while we know parenthood is an amazing blessing, it often turns into an all take experience.
As parents, we are desperate to understand and help our children succeed and prevail over any challenges that may come their way. Far too often I see parents who, out of the most genuine love, lose themselves while helping their children.
I believe that cases of this increase when your child may need extra interventions and have daily struggles that require more to get through the basics.
Having a child diagnosed on the spectrum can bring a variety of different emotions and responsibilities depending on the day. Your priorities often change because they have to, and the scale of give and take seems to tip even more off balance.
While you are in love with your child and grateful for them you are also tired, stressed, and often worried. The stress of processing your reality and navigating it year after year can add a lot of stress to the other members in the household as well.
Now to get to the good stuff! It’s time to put all that aside and think about YOU!
It’s time to get some balance in your life and that means that as parents we need to take some time to be selfish. Just go with me here and I promise you that in the end the other members of your household will be grateful, and so will you.
I get it, you may not have the time, money, or energy for anything extra. However, those are all excuses, so get out your calendar because it’s about time you penciled yourself and your priorities in.
Here are a few steps you need to take in order to keep yourself happy, healthy, and functioning:
Many say that Asperger’s isn’t a disability, it’s a different ability and I completely agree. We all know that children and adults with Asperger’s bring so many unique gifts to the table. With that said, it is important as a parent that you understand and truly believe that statement. You need to take that thought and hold onto it because as a parent trying to help your child navigate this world, it isn’t always going to feel that way.
It is our job and right as parents to worry in general, but during times of struggle it elevates a little, okay a lot, and your worries and fears stretch far beyond the soccer field. The game plan, the therapies, and the progress are all part of your life too. The struggle lies in the fact that the plan will need to change, that was once right no longer will be. Just as you think you are smooth sailing, a small change in life may cause the need to reset everything.
Many people see children with Asperger’s and they don’t understand that their needs are lifelong. They don’t see that even if you watch your child succeed at a young age, there will be new territory to navigate as they get older and new situations arise. Of course every child is different, heck every person is, but there is a big underlying root of anxiety, fear, and discomfort for those living the Aspie life.
Perhaps that doesn’t make you feel any better and might even scare you more. I’m sorry if that’s the case, but I truly believe it is important to acknowledge all of the feelings and territory that come with the job. This is a job that comes with a lot of hard work, confusion, sadness, worry, and readjusting. There are going to be days when it doesn’t feel like “a different ability” for you or your child and you need to allow yourself to feel that.
You need to hear and find others who know the guilt that you may sometimes feel when you doubt yourself.
There is a guilt that you feel when you are sad for your child during times of struggle, and when deep down inside you wish that struggle wasn’t there. You will have people tell you that all children struggle, which they do, but it won’t help or bring you any comfort. There are days that you will just feel lost and you will cry.
No matter what happens in life, one thing will always remain true. You will find a way to help your child and come up with a new plan to address life’s new obstacles. You will always rediscover your footing and help them do the same. You will always love and adore your son or daughter and you will never stop fighting for them.
While some days or time periods may scare you or even bring doubt, you will always once again feel that Asperger’s is simply a different ability, and those are the moments that are going to carry you through.
So even if you don’t feel it at the time, always carry that thought with you because I promise that the storm will pass and once it does you are always going to need the reassurance! It may be a wild ride, but the times that you get to celebrate that extra “ability” and triumph are what makes it all worthwhile.
My son absolutely loves letters, shapes, numbers, and colors. He can do different activities, but spends majority of his day focusing on the things that he loves most. He loves them because he understands them and they are always constant. A q is always a q, and b always comes after a. One plus one always equals two, and a triangle will always have three sides. Or in his case, his favorite shape, a dodecahedron, will always have twenty sides. A dodecawhat? Just trust me and stay with me here.
My son spends most of his day studying these things and lining them up. In fact, he lines everything up. I often even know he was in a room because of the telltale evidence he leaves behind. For example, the other day I knew he went into my bathroom because when I went in there, there was a line of tampons on the floor organized by color. He doesn’t have all the order that he needs in life so he creates it, and I’m pretty sure he would do this all day long if I would let him. Of course the one exception is that he likes the couch throw pillows on the floor and I like them lined up on the couch. Can’t figure that one out!
The point is that every day I feel like we often do the same things, over and over. I often even hear the same phrases and words over and over again. For me, this is the norm, and I am happy to live it, but sometimes I can’t help but feel like his life and mine are stuck on skip.
Like a record that just can’t get over that scratch, or for any youngsters out there, a DVD that is skipping back to the same part. Or for even younger folks, buying a movie on apple tv that won’t play through. Isn’t it amazing that no matter how far we advance as a society, our issues are still the same?
Anyway, every day is similar and it is a good thing in our house when we find something new to line up or perhaps even change the pattern, because that is change! In fact, my son is so creative in creating new patterns that when family was recently over we all felt like we were doing mind puzzles trying to find his reason and new pattern choice. I see it like he is leaving mini works of art all throughout the home. If you could see some of his more intricate letter designs I doubt you would describe it any other way. I often call him a letterologist or letter ninja if there were such a thing.
Superhero: a fictional hero having extraordinary or superhuman powers; an exceptionally skillful or successful person – Merriam-Webster Dictionary
When the time came for me to have children, there were a lot of options and situations that I knew I needed to be prepared for. Though I have to admit, majority of my thoughts were about choosing nursery bedding and baby names. Would I use cloth diapers or regular? What stroller and diaper bag should I get? While many things came to mind, it had never occurred to me that I needed to prepare myself to raise a real life superhero.
When I see my son, I don’t just see a child with Autism that needs help to be part of the world. I see a superhero who can teach me and others far more about the world than I could ever teach him.
I see the most amazing, dedicated, triumphant child who has a unique skill set unlike any other: a boy with the truest, honest, kindest heart that I’ve ever seen, with great passion for life and extraordinary interests. He is a person with a special connection to extraordinary individuals and a trusting heart that doesn’t judge. I see so many magnificent qualities in him, but the reality is that it is not all cake and rainbows.
The hardest part about raising a superhero is watching the battles that they encounter daily.
Watching them not only battle the outside forces in their environment, but the battle within their own body. There is no way to truly document how that feels as a mother because it is indescribable. However, watching your child discover the world in a way that most people could never imagine is the indescribable counterbalance to it all.
Everyone has their own philosophy on how to raise a child on the spectrum and I respect that. For me, the question often isn’t about how to raise a child with autism. It is how can I help foster his inner superhero? How can I help him build upon the wonderful foundation that he already has, and how can I help further develop the person that he is?
It is hard as an autism parent; mostly because there is a fine line between trying to help facilitate the kind of growth that will better prepare him for this world and how and when to let him soar and just be him. I think many parents of children on the spectrum struggle trying to find exactly where that line is in a life full of therapists and interventions.
It wasn’t until the day that one of my children was diagnosed with both Autism Spectrum Disorder and Sensory Processing Disorder that I realized quite how upsetting the topic was to many people. I still do not know why labels that are used for medical purposes, that open doors for children in need, can be such an issue for so many. After all, the word “Autism” to me is just a word. My child is still my child, and the world we live in may be unique at times, but it is also extraordinary.
I’m not sure if people just don’t know what to say, or if they are simply uninformed and inexperienced. As a parent of two children who face specific challenges, I can assure you that there are a list of things that I have had said to me that are anything but helpful.
Here are just a few suggestions for sensitivity towards parents with ASD children:
1. Don’t worry, he is just a being a boy or she is just being a girl, because boys are like this and girls are like that.
Yes boys and girls are different often times, but there are many signs and characteristics of autism spectrum disorder that if missed or ignored could be hurtful to your child if they do not get certain resources to help them overcome the adversity in their lives early on and build upon the many amazing qualities they already have.
2. At least they look pretty normal. If you just looked at them you would never know.
First: “normal” is a joke. Second: I never said that my kids were not “normal.” Third: what they look like at first glance does not directly correlate with the obstacles they face in their lives or that we face in our household. Fourth: I would love my child no matter what they looked like.
3. Doctors and therapists are just taking advantage of you and don’t always know what they are talking about. They are just getting you all worked up over nothing.
I am just going to insert some ????? here because this statement is insulting to many people on many levels. There is no comment even worth the time to respond to a comment that is clearly more about a person’s denial and own feelings than the life and best interests of a child.
4. There are plenty of kids who don’t talk. All kids develop at their own pace.
Before I started this blog I was in a place where I felt alone and had nobody to relate to. Since then I have met so many amazing people and families. I have had the opportunity to talk with and meet many people who were in the same place I once was when this journey began. I love sharing my story and feel honored to have many share theirs with me along the way. Often times I get phone calls from friends or professionals who think that I should meet a certain family. It touches my heart in so many ways, and I am so lucky to have that opportunity.
However, not everyone is in this situation, I know I never used to be. Important interactions with others are not always planned out. Unless we put our phones down, pick our heads up, and share our stories we will never know all the amazing moments and conversations that could have been.
I don’t put a sign on anyone’s neck, nor do I shout form the rooftops what is going on in my house. Okay so maybe with the exception of this blog. Lol! The point is that you never know what someone’s situation of life experience has been, so be sure to walk through life with your eyes wide open.
The other week we were at a kids’ play place and I noticed a dad intensely following around his child. I recognized his behavior in myself, that dad on high guard with his child used to be me. At one point our children were both in the same area so I put down my phone and walked near them, mostly just to make sure that both kids were going to be okay together. While I do get to relax and stay seated more in public spaces now, I know my children, and felt the shift was necessary.
Yesterday was the kind of day that had brought so much emotion. Maybe it had more to do with the series of events leading up to it, but either way, that is where I had arrived. It was time for our night time routine and my son had earned a sleepover with me since he had enough stickers. Now, don’t judge: I am desperately trying out new things to encourage positive behaviors. This is our new method. Negative reinforcement just gets lost, there have been way too many treats given out, and this is what I have left. Anyway, after spending over an hour trying to convince him to clean up all the money from Monopoly that covered my kitchen floor, it was most definitely time for bed.
Every night I do our usual prayer and sayings, but last night was so different. I try to mix them up for a reason, but trust me, this does not ever go unnoticed when I do so. After we went through the whole routine I decided to just lay with him until he fell asleep.
It’s not that I don’t or haven’t had concern that my son has been diagnosed with ASD, it’s that some days it just hits all over again.
It’s not easy to hear that your child is going to struggle in certain ways. The fear of the future can be downright paralyzing and while all children are perfect in their own way, it’s not what you dream up when you first think about having a child.
Nobody fanaticizes about therapists and sensory breaks. Instead you think about nursery bedding and buying cute tiny little shoes that your baby will truly never leave on. Having gone through a diagnosis process twice with my amazing and extraordinary loves, this is my best advice: “Denial Never Wins!”
Okay so let me explain, but first I need do a little storytelling. Stay with me, because I promise that this is going somewhere. The other day I was in the kitchen, all in my mom zone doing mom things, when my little cutie ran over to get me to do what he was doing. Not only did he run over, but he also invited me to join!
It’s easy to worry about whether the plan for your child is the right one. Will this be the right school, therapy, or path? The problem lies in the fact that as your child grows and life changes their needs are going to change as well.
You will never truly know whether the choice you made for your child is gong to take them 10 steps forward or 5 steps back. The fear of this can be downright paralyzing to us as parents. The hard truth is that we aren’t always going to get it right. We desperately want to, but we can analyze something until someone figures out how to lasso the moon and the outcome will still be as unpredictable.
I am not saying that research or doing your due diligence isn’t necessary, because it is a crucial part of the decision making process. It’s just that after enough Google work, online chats, and talking to different professionals your head is left feeling like it is going to spin right off your neck.