Overcoming Denial to Participate in Joy with Your Child

Denial Never Wins by Jessica Nieminski

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.

Denial

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!

A Letter to My Daughter: Having a Sibling with ASD

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:

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Grace,

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.

Just Jump: Making the leap to plan and decide

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.

The issue behind Autism as a “trend setting” diagnosis

I recently read an article about Autism, as I do many that pop onto my radar via social media. I don’t often agree with everything I read, just as you may not agree with everything I write. Heck, maybe you are upset I even suggested Asperger’s was Autism. I am simply using the term because today many different disorders are considered to be on the spectrum, not because of my personal opinion about it. That aside, the article was focused on the large increase of children considered to be “on the spectrum”. This is isn’t the first time I have seen ASD painted like some new up and coming trend that had far too many people jumping on the bandwagon. Is the awareness and the number of diagnosed cases greater than before? Yes. Does that make it the cool new thing that any parent wishes for and would do anything to have to face? NO!  Look, we all love our kids unconditionally and every person has their own set of strengths and struggles. With that said it’s time to clear up a few things about “Autism Parents” and the idea of a trend setting diagnosis:

Top 3 Things I Won’t Tell My Kids

I will never forget the day that I picked up my very perceptive 3-year old daughter from preschool and she said a combination of words that stopped me dead in my tracks.

“Mommy, why am I different than the other kids?”

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I looked back in the rear view mirror and saw tears streaming down her little face. I had to pull over in that moment. I momentarily felt verbally paralyzed and wanted to cry myself. I asked her to clarify to make sure we were talking about the same thing before I responded.

Finding the ABILITY in Asperger’s

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.

Child with balloons

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.

Pencil in YOU

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.

Pencil In You

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:

Paralysis By Analysis

Becoming a parent means that you have a lot of extra things to worry about. All kids are unique and need help in their own areas, but what happens when you find out that your child needs more help than most? What goes through your mind as a doctor tells you that your child has a developmental delay of any kind? What will having Autism Spectrum Disorder mean for your son/daughter? Why do you grieve at first like you lost a child that is sitting right in front of you?

What If copy

Fear and worry can often be more limiting to you than something that seems limiting to your child. If you are the parent of a child with ASD, it can be incredibly overwhelming in the beginning. There are lots of decisions to be made right away. After all, time is of the essence and you may feel like you already lost some before your child had the diagnosis.

Stuck on Skip: The Patterns of Life

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!

Happy family on meadow at summer sunset

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.  

Raising A Superhero

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.Boy plays super hero at sunset.

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.  I see a boy with the truest, honest, kindest heart that I’ve ever seen.  I see a boy 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.