Marky Marc’s World

 

My son’s name is Marco Antonio Jr. “Marky”

He is 4 years old and was diagnosed with autism at 3 years old. Our journey began right before he turned 2 years old. The first time I realized his meltdowns were more than just terrible twos approaching, I was 6 months pregnant and we had gone to a baptism party for my niece. I was alone with Marky and my oldest son, we arrived at the party and the moment we walked in Marky screamed his head off till he turned completely red. Everything about the party made him mad. I did not know what to think I sat in a booth by myself with him to see if he would calm down, while my oldest embarrassed by all the starring eyes went to sit with my mom and his cousins at another table. No one could approach us, and no one even dared to try. Marky’s anxiety of strangers and even familiar faces was at an all time high. I was emotional and began to cry and decided to leave. I gathered my things and my boys and ran out the party before anyone could notice my tears falling down my face. I got in the car and like magic Marky was my happy go lucky boy once more. I on the other hand was a frantic mess. I called my husband and told him I how embarrassed and sad ashamed I felt. Everyone eyes were looking at Marky and me in full on judgment, never once did anyone ever ask, how can I help? All I did get is “What’s wrong with him? Why is he screaming? Is he tired?”

From that point on I felt deep in my heart that something was going on but I was not sure exactly what.

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 A month after Marky turned 2 years old I gave birth to my daughter, Marky refused to go near her. When my husband brought him to the hospital to meet her he cried and cried pushing her away telling my husband that he wanted to go home. Markys Language at this point consisted of 1-2 word phrases only. We thought maybe once we brought her home he would warm up to her and be more welcoming, but he was not. He would cry and push me out of his room if I dared to bring her in with me. My husband is a police officer for the city of Chicago where we live, his schedule consists of 12-14 hours days so this leaves me to look after the kids on my own. Something that I never thought would bother me because before my husband I was on my own with my oldest for 6 years. 

Markys tantrums became harder to deal with after my daughter was born because we began to have more visitors at home. Marky did not like this at all. We come from a very close knit family who frequents each other very often. My parents were at our house on a daily basis and my in laws were either at our house or we would go to theirs on a weekly basis. It did not seem to matter how close or often we saw people Marky’s reaction was always the same. As soon as the door bell would ring he would bolt to his room in terror and shut the door. He would not come out till everyone was gone, and if we did bring him out he would cling on to us with fear in his eyes and refuse to look at anyone. From this point we began to notice more things, simple tasks such as taking a bath became challenges. Marky was never afraid of baths before the age of  two, now to get him in the bath was challenge and sprint to finish as fast as possible so the screaming could stop.

Marky was very attached to his bottle, we tried multiple cups and nothing seemed to work, especially after he got a sore throat and go sick he completely stopped eating solids. He clung to his bottle for dear life. He was losing weight instead of trying to gain weight because all we could get him to take in was white milk in his bottle. Before he got sick he was eating soups with rice and vegetables almost on a daily basis bananas, and pears. At this point we decided to call early intervention.

He was 2 ½ years old and we were not seeing enough change in him to believe that this was just a phase.

Early intervention came to our house and did an evaluation they believed that he showed definite signs of sensory processing disorder. The sensitivity to loud sounds like toilets flushing and the sensitivity to food textures, only wanting soft foods and to touch, my Marky was not a hugger, he did not like to be held for too long he would pull away from us if we tried to hold him for too long. Early intervention suggested we begin looking into private places since he was a few months away from turning 3 and he would be aging out of their services. 

A friend of mine referred me to North Shore Pediatrics. We began seeing an OT therapist first to help with the sensory component, she then referred us to a Speech therapist because at this point if it wasn’t 1 or 2 words it was mostly screams that he used as communication.  Therapy was going well after a few weeks Marky began to get used to the place but he still cried every time we would take him and it was time for him to go in alone. I took Marky to his 3 year old physical and he had a major melt down at his pediatricians office. I began to cry and told her that I did not see many changes regardless of the therapy he was already receiving. She gave me a referral for a Neurology test to be done. Marky was so overwhelmed that they were not able to test him completely because he was not able to self sooth himself to stop crying. 

The weekend before they delivered us the results I just remember crying my eyes out in fear. Fear of what? I am not sure, the future, the care and responsibility that would entail with Marky, for my other kids and how this would affect them as well.

A million thoughts ran through my head and self-doubt was sinking in like quick sand.

My daughter was barely 1 my husband was gone almost all day everyday, how was I going to keep sane with 3 kids and now this, whatever it is. When they officially told us it was Autism, I cried for days alone, I mourned, I feared, and I was angry, angry with God, the universe and myself. Sometimes on the bad days I am still bitter, but at this point I think God knows my heart enough to know that my mood swings are a lot scarier than my actual bite. We were referred to begin receiving ABA therapy and continue the speech and OT. Marky cried his eyes out and I cried my eyes out behind closed doors listening to him cry, but little by little we began to see major changes.

He was calmer, he was speaking a lot more clearly and for the first time I heard I love you mom.

He began attending school at 3 ½ years old. The first month before receiving ABA he could not tolerate school at all. We switched schools after his IEP meeting and he was put in a blended program classroom. He absolutely loved it. There were no more tears and his aid was a seasoned teacher who had seen it all and embraced Marky with open arms. 

Marky will be 5 years old in March and after almost 2 years of therapy he has blossomed into the most loving, chatter box, adventurous foodie I know. His challenges still consist of social settings but the meltdowns are almost completely no existent. He blends in just fine with his classmates and is exactly where he needs to be academically. He still will not initiate first conversations with others, but he will respond and play and interact with his sibling’s and cousins and classmates when they engage him. He is eager to visit new places and travel.

He no longer fears our doorbell and he fully accepts his sister with love and compassion.

He is a protective big brother who cares for his sister and is quick to come to her rescue when she needs help. He loves saying hello to his aunts and uncles on the phone and birthday parties are his favorite social events to attend now. His food pallet consists of vegetables, fruits, sweets and carbs, he is no longer afraid to try new foods and the bottle is successfully a thing of the past. 

My fears have not disappeared, I still get questions or looks if he happens to flap or pace, or script from his favorite you tube videos, but my skin has gotten thicker and my voice has grown loud enough to speak up for both myself and Marky.  I am and will always be his number 1 fan. I cannot stress enough how important early intervention has been for Markys growth. It might have taken me a little while to accept that I needed to call them, but I will never regret doing it. It helped me set up Marky for a more successful and positive first school experience. I am beyond indebted to our team of therapist, for not only the support they have given Marky, but for the support and understanding they have surrounded our family with. It is definitely a commitment. There are plenty of times I just want to cancel everything and get my life back but when Marky hits a new goal with flying colors it makes sticking to it all the more worth wild. He is a shining star that brightens up the darkest of rooms with his smile and laughter. Marky’s last IEP meeting determined that his social emotional composure was stable enough to not need to see the social worker anymore on a weekly visit. Knowing that Marky is adjusting enough to have services removed from his plan makes me feel amazing. 

This year I made it a personal goal of my own to advocate more on my social media platform and share Marky’s story in hopes to advocate inclusion and understanding to all those who follow me. I have decided to run for Autism Speaks in the Chicago Marathon if you have a chance please check out the link to read more about why I have decided to run.

http://speaks.convio.net/site/TR/TeamUp/TeamUp?px=4430055&pg=personal&fr_id=4279

— Janet