Suspended

[This post is dedicated to my husband…my friend, my partner, and my lover]

I feel like I am walking a tightrope….

This month has been a whirlwind of emotions, filled with excitement, hope, paralyzing fear, and uncertainty. April is Autism Awareness Month and so I have done a lot over this month to help educate and spread Autism awareness wherever I have been. This month always brings bittersweet emotions for me though because on one hand Autism education and awareness are being spread throughout the world, but it also reminds me that we have a long way to go still. In our home; however, everyday brings with it Autism awareness. Nico keeps us on our toes and educates us in ways I am forever grateful for. Nico continues to progress in so many ways, but I still see so much that he needs to learn and grasp and it scares the hell out of me. With every day of progress comes a day where I want to just freeze time and catch him all the way up before releasing him into a world that may not be ready yet for what he brings to the table.

My husband and I wake up each day with hope in our hearts and renewed strength that we dig deep down inside for because that is what is needed when you are raising a child with Autism. We sometimes feel so suspended in the air above everyone else and their neurotypical children. I constantly feel like I’m trying to find our place amongst the masses. And moving to a whole new state (which has been its own adventure) didn’t necessarily rescue us from the feelings of suspension. I just constantly cling to my hope, and patience, and the love I have for my men, big and little, and that carries me through my days. But, we are going to be doubling down on hope, strength, patience, and every ounce of sanity we can muster as we embark on our next big adventure…

we’re having another baby!

Yep, I’m the soon-to-be forty year old who thought it would be cool to be a mom all over again…lol! Talk about feeling suspended in mid-air! My husband and I thought long and hard about this decision though. We always knew we wanted more than one child, but when Nico was diagnosed we became paralyzed with fear that our life would forever be filled with challenges and hardships. How wrong were we?!? Although raising a child with Autism has been challenging, it has also been the most rewarding, exhilarating, fulfilling experience of our life. But to think of having another child with Autism was more than we could bare so we tucked away the idea of growing our family down deep into the recesses of our soul and put all of our energy into raising Nico.

Now, we have had a great run in these last six years with our precious Neeks. My husband and I have made many sacrifices and took risks all for the sake of our Nico. I am lucky to have a husband who puts his trust in me and knows that the decisions and plans I have for our family’s well being will always be for the best. I’m the planner in our family…lol. But the one thing that has constantly tugged at both of our heart strings is the desire for another child. Neither of us was ready to take the lead in this monumental decision though. This was something we kept looking to the other for guidance around because it was going to be such a risk, such a sacrifice, and such a leap of faith.

We have seen how much Nico thrives around other children over these last years. He may not always play appropriately with them, but he definitely learns from these social interactions and that is what is so invaluable. We have also taken note of the special bond our nieces, nephews, and cousins have with their siblings. Both my husband and I have siblings and we cherish those relationships dearly. To have a sibling is to have a built-in, forever on your team, “partner in crime” for life. We just couldn’t fathom Nico going through life any longer without his own partner in crime. We want him to have someone who will support him, challenge him, love him, protect him, and grow with him; we want Nico to be that person for someone else too!

So, here I am! Four months pregnant with another BOY! A baby brother for the most amazing BIG BROTHER ever!

However, as soon as I found out I was having a boy that paralyzing fear struck me again. It struck my hubby too. We have read many a research article that has suggested that the odds of having another child with Autism when you have one already increase and they are even more heightened when that second child is a boy. I contemplated sharing the research here in my post since I like to use this platform to share resources, tools, and educational content, but I decided to not include the articles since I cannot live in fear anymore. We went into this knowing the risks, knowing there will always be unknowns whenever you decide to have a child so we have decided to trust that all will be fine. We will manage whatever is thrown our way because we have been doing a pretty damn good job already.

We know our busy, work-filled lives will have to adjust to another beautiful baby and that Nico will need the same kind of attention, if not more, with a new baby in the mix, but this is the life we signed up for! People do it everyday. Our life has been an adventure thus far with Nico; walking a tightrope that has us suspended high in the sky. Sometimes I feel like I’m falling and yet I have my partner in life, my husband, grabbing my hand just as I fall and pulling me right back up. We have each other’s back at all times in this crazy, exhilarating life and so I know this new adventure will be just fine. We’re scared to death, yet the most excited we have been in a long time.

I have spoken to many Autism parents over these last years and I know I am not alone in my concerns. I know of parents who have chosen not to grow their families for the same reasons that kept us from doing it sooner. I have even talked to friends and family that do not have the same challenges as us and they shared their own fears and concerns about having more children—money, time, health, mental, physical, and emotional well-being. Having a child is no joke…the struggle is real. But, I know I’m not alone in this journey. There are other couples out there just like us who are contemplating the same choices and feeling the same angst as us. I say to you now (to whomever actually reads this; I talk as if I am speaking to the masses): take each other’s hand and just trust and believe…in each other.

In our family, music is so important. From the lyrics to the rhythm to the doors it opens into our son’s world, so I am compelled to share these words from a song that seems to be the anthem for my life–which just so happens to come from the soundtrack of my life, The Greatest ShowmanTightrope:

Some people long for a life that is simple and planned
Tied with a ribbon
Some people won’t sail the sea ’cause they’re safer on land
To follow what’s written
But I’d follow you to the great unknown
Off to a world we call our own

Hand in my hand and we promised to never let go
We’re walking the tightrope
High in the sky
We can see the whole world down below
We’re walking the tightrope
Never sure, never know how far we could fall
But it’s all an adventure
That comes with a breathtaking view
Walking the tightrope with you…

You got this! I know we do! Trust and Believe!

Perspective

I keep playing and replaying this one song, “A Million Dreams” from The Greatest Showman soundtrack. First off, this soundtrack and the movie itself is so powerful. It’s honestly a testament to the importance and power of inclusion and as a mother of a child with Autism, all I want is a world of inclusion and acceptance for my sweet boy. Anywho, this song, “A Million Dreams” is really resonating with me this week because that is exactly how many dreams I hold in my heart and head for my Nico. I wish for so many things in life for him. Everything from him being fully potty trained to becoming a husband and father. His potential for greatness is infinite in my eyes so I dream and hope and wish on the daily for him.

We recently completed Nico’s evaluation for recommendation of services when he starts Kindergarten in the Fall. He will be attending our local public elementary school and I couldn’t be more excited, yet petrified all in the same instance. I wanted to start the evaluation process early so that school personnel could have ample time getting to know Nico and his mama (they will probably be seeing and hearing from me a lot…just saying).

I was apprehensive about the two-day evaluation, but also very hopeful because Nico has grown so tremendously since his diagnosis in 2015. We met with the psychologist, speech therapist, and one of the special education teachers. They were very welcoming and immediately began to pair with Nico. Nico was his typical self, gravitating to all the books he found in the room, inferring what each book was about without reading a word, reciting certain phrases from his own favorite books/films that he felt related to the new books, and being his quirky, sweet self. I melted when the speech therapist said, “I just love him” under her breath to me. That’s how I want everyone to feel about my sweet boy.

But, when they started to ask him questions and prompt him to participate in certain activities for the evaluation data my heart began to sink into my stomach. He was not responding appropriately. He had no interest in playing with the toy cars, could care less about drawing with the crayons, and pushed aside all of the developmentally appropriate toys the psychologist urged him to interact with. At one point, he became aggressive when the questions persisted and the encouragement to play with certain toys became too much for him. I immediately corrected him, mortified that they would think we allowed him to hit anyone.

In that moment, my whole perspective changed. I slowly realized that much of the progress that Nico has made might not be as grand in scope of age appropriateness as we have been thinking it is. Just saying this makes me so angry though. Nico’s made amazing progress and I refuse to believe it won’t be enough for Kindergarten, but sitting in that evaluation room, watching them feverishly take notes and glance at each other with silent feedback filtering between them I knew that our work must continue.

Once we finished the evaluation, the three of them did agree that Nico would definitely be recommended for services and that our next step would be to create an IEP (Individualized Educational Plan), where we would come together as a team and determine how many services Nico would need and how much time would be allotted to such services. They highlighted many of Nico’s strengths which included: a photographic memory, strong ability to infer, great problem-solving skills, and that he displays hyperlexic behaviors. Hyperlexia is a complex syndrome that can accompany Autism or be standalone syndrome, but what is so fascinating is that only 5 to 10 percent of children with Autism have hyperlexia. I love that Nico falls into this small percentage!

I left the evaluation with mixed emotions. Hopeful for what would come from the IEP meeting while also feeling paralyzed; maybe I will just home school Nico. I can be in complete control and not have to worry about how others will work with my child. I can only imagine what those three women thought once we left the room. Maybe they felt hopeful and thankful because Nico has amazing strengths and parents who have been doing all they can to help him progress. But, maybe they had a different perspective. Maybe the special ed teacher was nervous, exhausted thinking about how much work Nico will be on a daily basis. Maybe the psychologist felt concerned knowing that Nico is still not fully potty trained and can be aggressive. Maybe the speech therapist was apprehensive thinking about adding one more student to her caseload, knowing that Nico comes with complex needs.

However, what I choose to focus on is how much Nico will help transform the culture of his school. How he will encourage and motivate inclusion and acceptance. And I hope that his teachers and aids and support staff use him as a catalyst for change in shifting the mindset of anyone who has trouble accepting those who are different. That’s the perspective I hope this evaluation evoked.

I truly understand the power of perspective more now than ever before. I look at my son with such pride and hope and excitement. He never ceases to amaze me and even prove me wrong (I like to think that’s tough to do, but this stinker continues to do it). Autism has thrust me into a world of ever-changing perspectives and taught me to not focus on the status quo, but rather the extraordinary. With all of its challenges and hard work and sweat and tears, comes a world of wonder and surprise and endless possibilities.

I have come to understand fully that once we change our expectations and perspective, the world will grow and we will be celebrating more than grieving the childhood we hoped for our children. Autism has dramatically transformed my family and brought out the best in all of us. That’s the POWER of perspective right there!