Trust and Believe

As I lay here in bed on the eve of my son’s first day of Kindergarten, I am surprisingly comforted by the fact that there are hundreds of other parents sending their kids off to Kindergarten tomorrow as well. Parents who are possibly tossing and turning in their beds, withered by anxiety. Parents who are nursing upset stomachs as they think of all of the “what-ifs” that come with sending a child to Kindergarten. Parents who are pacing all over their homes with lists running through their minds of all the things they need to have ready for tomorrow, all the things they want to say to their children in preparation for this immense milestone, and all the fears they are trying to suppress so they can eventually fall asleep. There are parents who are excited for what this year will bring and parents who are silently celebrating the return of a kid-free home for much of the day after a long, exhausting summer vacation.

To all of these parents, I feel you.

But, to my fellow special needs parents out there….I am feeling everything you are feeling even more deeply.

I feel your absolute gut-wrenching fear for your child because he is going to be in a mainstream school for the first time with maybe a fraction of the support and services he has been receiving up to this point.

I feel your stifling anxiety when thinking about the moments during the day where she may have no 1:1 support and could get overwhelmed trying to navigate the newness on her own. You’re praying all the coping strategies and self-regulation tips she has learned will help her not become utterly overwhelmed.

I feel your nervous excitement because your child has shown so much progress and you feel that he will be just fine….but will it last?

I feel your constant, 24-7 concern for your child because of the possible stares, judgmental whispers, unkind words, feelings of isolation, and downright mistreatment that she may experience from other children who have not quite learned empathy and the importance of acceptance.

I am feeling all of these feelings right alongside you and have been feeling them since the day we got our son’s Autism diagnosis. Everything I have done thus far for my son has been in preparation for what awaits him tomorrow morning, but nothing could have prepared me for the level of fear that has taken hold of me over these last few months as August 26, 2019 approached.

However, tonight I am going to will myself to trust and believe that everything is going to be just fine.

I trust and believe that my Nico is ready for this new adventure.

I trust and believe that he is going to surprise me like he has done multiple times before and thrive in Kindergarten.

I trust and believe that my husband and I have made the best decision to place him in this school because he is ready for new experiences.

I trust and believe that his teachers want him to excel and are going to ensure he does through any means necessary. They will protect and advocate for him everyday.

I trust and believe that he will make friends because he is funny and sweet and empathetic and the kids in his class will see value in having a friend like him.

I trust and believe that although Nico may display unique behaviors, it will encourage his classmates to accept difference as something that makes the world a better place.

I trust and believe that I will eventually stop crying myself to sleep and waking up panicked because I’m worried that Nico will struggle and have more tough days than good. I know his good days will outshine the tough ones.

And I trust and believe that with everyday that passes, Nico is going to be a change agent for his new school. Someone who will help educate others about the wonders of Autism and how fantastic the human brain is. He will show others that being different is not something to shy away from, to judge, or want to dislike, but instead something to embrace, celebrate, and encourage.

I want Nico to walk into his new school tomorrow knowing that he matters, that he will be accepted, that he has something to contribute. And when someone stares a bit too long or turns away when he comes around, I want Nico to always say to himself (and even say it out loud): This is me! and then walk away knowing that being who he is will always be enough and should attract, not repel, others.

So, to my precious son….your mom and dad love you beyond measure. We trust you. We believe in you. You are brave. You are our warrior. You are YOU and YOU GOT THIS!

This video celebrates my Nico and the amazing little boy he is!

Grateful

Sometimes, in the pure minutiae of life, when my mind and body are running in five million different directions I forget to stop and be grateful for all I have. I am not one who has ever dwelled on the negative for very long. I mean, I recognize when things suck, but I have prided myself on finding the silver lining in everything and staying positive and optimistic. It has been tough over these last years, at times, with the struggles I have had to endure with my Nico and his journey through this maze called, Autism, but I have learned to even find a silver lining in this journey that we are on together.

I am finding myself waking up with panic attacks because Nico’s first day of Kindergarten looms over our heads and my husband and I are beyond terrified for what is to come, but last night I stopped myself from going down that rabbit hole yet again and I willed myself to think of ten reasons to be grateful right there in bed at 2:37am. Here they are:

1. I am grateful for the constant progress Nico has made over these last four and a half years. He is using more language and can communicate his needs and wants so much more, which gives me relief because he will be able to do that with others when I am not around. Nico is a master scripter and much of his language and day to day talk comes from films and books he memorizes with lightning speed. I used to worry about him scripting so much, but I have learned it’s his super power. And, I am not alone! Check out this article to learn more about this superpower!

2. I am grateful for my husband and my father who keep everything in our home and everything with Nico running smoothly when I travel for work. Not many couples withstand raising a special needs child because of the strain it places on a marriage, but my husband and I are stronger than ever. And, to know I have my father as a constant presence in Nico’s life is invaluable to me. To think that this man left all he knew back in Chicago and made the move with us to Texas just so he wouldn’t miss out on his grandson’s life is a feat to be celebrated. My father has been instrumental in my son’s life and I see a reinvented man in him. He truly transformed for Nico.

3. I am grateful for Nico’s team of therapists at the Promise Center for Autism who have absolutely moved mountains in growing Nico into the kiddo he is today. Their constant patience, drive, empathy, and straight up love for my son have been unwavering. We met yesterday to discuss Nico’s transitional plan out of their full time care and into a mainstream Kindergarten classroom and they proved to me once again that they have Nico’s best interests at heart. They sat with me and shared Nico’s strengths and what he needs more work with, helped develop a plan of action for Nico’s Kindergarten teacher, made sure to let me know that they will continue to provide ABA to Nico in any environment we need so he continues to grow, and literally embraced me with hugs and support when I broke down in front of them. I want every Autism family to have this same experience with their therapists. These people become family in more ways than one.

4. I am grateful for special education advocates who walk in to IEP meetings with families desperately seeking better services for their special needs children. These individuals know the laws and what our kids deserve and must have by law. I want Nico to be able to grow and flourish in a mainstream Kindergarten classroom, but he needs certain supports and when a district is not offering to provide them, it is good to know these laws. I was a teacher for over 10 years so I know that it can be difficult to allocate funds for all of these different special needs, but the law is the law and so we will use it to Nico’s advantage. I also am grateful that if Nico does struggle without certain services in his classroom, I can pull him out as a medical necessity and it cannot count against his attendance. Here is the law for the state of Texas. Research what laws protect your child and if you need support find an advocate.

5. I am grateful that Nico has learned to play more appropriately with and alongside other children. This has been a labor of love for all involved. Nico’s Autism makes it difficult for him to play appropriately with other children. Social interactions do not come easily to our kiddos. He has struggled to share toys and other items due to his rigidity and the unpredictability of other children. He still needs more practice, but he has learned certain coping strategies which allow him to wait patiently until it his “turn” with a preferred item and this is a monumental feat. I want him to be able to engage with other children without anxiety and stress. I just really want him to have friends.

6. I am grateful that soon Nico will have a brother. My husband and I always wanted more than one child, but after Nico was diagnosed with Autism we were paralyzed with fear to have more children. We didn’t know what life had in store for Nico and how that would affect us as a family. But, in seeing how far Nico has come and how much we believe in the sibling bond, we decided to just go for it and grow our family, knowing that it will only bring even more joy to our lives. Nico will have a forever friend and “partner in crime” who will have his back for life.

7. I am grateful that I can have children. I met a couple on a flight I was on last week who had an adorable 18 month old boy. As I sat there observing how amazingly content he was sitting on his mother’s lap (and trying to secretly caress his little leg so as to rub some of that calming baby “juju” onto my unborn son and me), the mom sparked up a conversation with me about my pregnancy. She told me that she and her husband tried for years and years to get pregnant and stay pregnant and at 42 years old she finally was able to have a baby. I thought to myself how unbelievably fortunate I am to have been able to conceive so easily (first tries both times for us) while so many other couples struggle and spend thousands of dollars trying to conceive. Plus, I loved that she and her husband were trying again to have another baby. At 42 years old, she was going for #2. I marvel at what a woman’s body can do. Geriatric my butt! More like fantastic!

8. I am grateful for my family and friends who love my Nico, my husband, and me beyond measure. My husband and I are truly family-oriented people and so our families have quite literally been our life lines. Leaving Chicago and all of our family and friends was a heart-wrenching experience, but even from afar, they send us love, encouragement, and support daily. We have made some great new friends in our new city and were blessed to have family down here already, waiting to welcome us with open arms, so we have not gone without that familial love which is instrumental when raising a child with Autism. My heart could burst with all the love I have for every single one of our family and friends. My kids are so darn lucky and blessed.

9. I am grateful for being able to wake up another day. I have had some health scares in my life, with (now) two of them teetering on being fatal and, yet, I have survived and been able to thrive. I do not even want to imagine what life would be like for my husband, my father, and Nico if I was not here. We are a team and without all of us working our magic and taking this journey together, I don’t know what the future would have in store for them, especially my Nico. I’m not tooting my own horn or anything, but I do think life runs just a bit smoother for all involved in my household when mama is at the helm….just saying. I take my health very seriously now. I have way too much to live for and knowing what it feels like to lose a mother early in life, I do not want my son to carry that burden on his shoulders for the rest of his life; he already shoulders enough. Thankfully, I have some pretty incredible guardian angels ensuring that I stay put right where I am.

And finally….

10. I am grateful for Autism. Yes…I said it. I am grateful for this developmental disorder that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior. I was so fearful of Autism before. I used to even tell my family and friends that that was why I was nervous about having children; I was concerned that my child could have Autism. Out of everything I could have worried about my child being born with, Autism was what I was fixated on. That’s because it’s unpredictable and I have never done well with unpredictability. I like to have a plan of action for everything. I like to be able to solve any problem that comes my way. I want to “fix” things. Autism is not “fixable” nor do I need it to be, but before I knew better I just feared that I wouldn’t be able to take it away from Nico. What I have since learned is that it’s truly part of who my son is…for better or worse. But, in raising a son with Autism, I have become the best version of myself. I have learned infinite patience, I have learned to not sweat the small stuff. I have learned to take each day at a time. I have learned to live in the moment and throw my rule book to the wind. I have learned that what others deem small milestones we see as monumental milestones. My marriage is stronger. My bond with my father is stronger. My work ethic is stronger. I wake up everyday with a grateful heart.

Nico is a work in progress, but who isn’t? He has a lot more to learn and achieve, but what 6 year old doesn’t? Autism has allowed me to see my son in an extraordinary way that I may have missed if he was neurotypical. He impresses me each and every day and I do not take for granted what he brings to my life.

Being grateful has allowed me to work past my fear of what Autism means for my son and instead look at how Autism elevates my son’s potential to be GREAT. To be DIFFERENT. To be a CHANGE AGENT in this world of prejudice, indifference, apathy, and fear of what is different. I don’t fear Autism anymore. I embrace it, I nurture it, I learn from it, and I will be forever grateful for what it has meant for my family….a chance to be superheroes right alongside my son.