I woke up this morning feeling impressed to share this.....A few weeks ago I woke up from the dead of sleep and ran upstairs and started writing....I am not sure anything could make me feel more vulnerable than sharing this.
The first time Autism slipped from my mouth it felt wrong. The first time it slipped out of anyone else mouth I wanted to punch them in the face. How dare they label my child, my sweet little boy.....but I knew it was true, my heart told me so. I didn't want to accept that.
like any mother I wanted to make him better I wanted to make all of this better. My mind keeps going back to sitting in the van on our family trip to Oregon only worrying about what my darling children were going to wear when they saw my family. Completely but not totally brushing off the recommendation from our beloved pediatrician about getting Jett "evaluated" for losing his words. Looking back I was the one pushing for him to recommend an evaluation.
And then we got there (home) and I saw it. I am not dumb, I am an educated women you know...after all I did major in childhood development for one whole semester. Jett clung to us the entire week. For 7 days he hardly ever let us put him down. He clung to his little toy kitty. He refused to make eye contact. The spinning, the tip toe walking, the hoarding. It was all there before but I had refused to see it. And now I was sitting in my sisters beautiful living room with a house full of people laughing and visiting. I watched Jett playing by himself in the corner. I refused to accept it. "He is just shy." "He sure loves his daddy." As he tightly wrapped his little arms around his Daddies neck when someone so much as looked his way......out of desperation not wanting mine and Kylers family to notice I blamed it on having his new baby sister.
But then a dear older sister had the courage to call me and say "he is like a different boy.....it is like is is regressing." I remember the word regressing just seemed to hang in the air.
Kyler got home from work and I couldn't make myself look him in the eye when I voiced my concerns.
But when I did meet his gaze all he said was "we shouldn't put a label on him, is there a blood test we can do?" in a calm voice laced with a hint of concern. I searched his eyes those beautiful brown eyes of his that falter even when his voice and calm demeanor won't. His eyes betrayed him....he seemed scared....and maybe angry that I would even suggest a label for his son...our son.
He went to the computer and searched "signs of autism." My mind jumped back to when we weren't sure if I was in labor with Jett and kyler nonchalantly typing in "signs of labor." Just as when I was in labor, my perfect little boy had most of the "signs." I wanted to be back in the van on our way up to Oregon again. I sat there staring at the monitor feeling numb.
And then something happened that shook me to my very core and caught me off guard.
I was completely blindsided with the anger I suddenly felt. I suddenly hated that little kitty that he carried around. It represented everything about Autism to me. It represented everything I feared we would lose because of this. I felt a pang of guilt for hating anything. One of the few things that I remember my Dad who passed away when I was a little girl telling me was the hate was a bad word. My entire life I wanted to make him proud and I never wanted to feel hatred towards anything or anyone. I was to be the peacemaker in the family.......but I did.
We hardly slept that night.
I kept on waking up from sleep crying.
I felt so so so much guilt. Did I eat too much sugar during my pregnancy? Was it all the antibiotics I had to take. Why did I take him off the delayed immunization schedule at 10 months?? Was it all the shows I let him watch during my pregnancy with Wynnie? Why do we think it is okay as Mothers (and fathers) to beat ourselves up like that......maybe because it makes us feel like we have power......in a situation where we truly don't.....not completely.
The next morning I called my Mom.....I shook my fist at the heavens full of anger and hurt. I didn't want this for my little boy.......it isn't fair....not him......Why won't Heavenly Father let something happen to me......and take this life altering diagnosis from him......my little boy should not have to suffer in anyway!!!"
After getting off the phone I was filled with the sweetest type of calm. I fell to my knees and begged our Father in heaven for his forgiveness....feeling a mix of shame and sweet, sweet peace.
I will never forget standing by Jetts door before we put him to bed with my hand over my mouth witnessing my husband, Jetts and Wynnies Daddy sitting on Jetts bed pleading and begging for him to point to his nose like they used to. You could almost taste the desperation in Kylers voice when he said nose over and over again.......and the defeat when he never touched it.
For several weeks women came into my home evaluating my little boy. It was clear that he would receive services for speech. He comes from a long line of speech graduates....welcome to the club buddy ;) I tried to shake the feeling that me and my home weren't being evaluated as well. I went from one extreme to the next. At first my home was polished and our clothes ironed (something I never do) to my home being a complete wreck and me answering the door in my pajamas.
As we got to know these women I stopped worrying so much about if they saw me as a fit mother and simply let myself feel the love and compassion they had for our little family. We are on the same team. We are Jetts advocates.
He is going to a special needs preschool where every parent seems to simply just understand each other, it is safe. During snack time a little boy in Jetts class wiped his hands on my pant legs.....His mother reached over with a napkin wiping off the leftover cake on my pants. We smiled at each other and looked in each other eyes for a second too long. Without words we were speaking motherhood we both understand... what it is like to arrive in Holland when you were expecting Spain and not wanting or be willing to change a single hair on that cute head of theirs. I looked around the table my heart smiling at my fellow mother and father warriors.
Tossing around the word Autism with Jetts name still stings (as in getting stung by a whole swarm of honeybees sort of way)....but I am able to talk about it with the same tone of voice and feeling I would use as if I were describing his strawberry blond hair, his cherubic rosy cheeks or large green eye.....or that contagious laugh of his.
Melanie (the behavior specialist) said that I need to mourn this.
I told her I already had and we really were just fine. It is what it is. We are over the moon for that little boy. So I smile and keep on smiling. I think about how much we have to be grateful for and how much we have to live for.
And then I am washing the dishes and feel the warm water on my hands and and watch the suds glide over the water and I let my guard down. I allow myself for a split second to feel anything but grateful.
My heart felt like it was ripped right out of my chest. Knocking the wind right out of me. I couldn't breathe. It was paralyzing. I moved right past the ugly cry into the hysterically sobbing with snot running across my face cry. It felt so raw....it hurt so bad. I didn't want this for him I started screaming to no one.
Feeling devastated....nothing in me even trying to gain my composure.
I sat on the stairs still sobbing and called my older sister. She said to breathe. It wasn't fair. It would be okay. As she talked I felt two tiny arms wrap themselves around me as far as they could reach......Jett laid his head on my back and hugged me from behind. As if to comfort me....as if to tell me it would be okay.
I knew in that moment we would be just fine.
Ever since he was born every night when I say our goodnights I whisper in his ear "I love you always and forever and no matter what!"
I love him.
I love that sweet, sweet little boy of mine.
Of ours.
