Tuesday, April 15, 2014

Guest Blogger

Just want to give a shout out to this Super Mom! She is incredible and definitely a mama i look up to!
Feel free to check out her amazing IG feed @suprtucksmama you're guaranteed to be inspired!!

Q: What signs did you first notice in your child that made you concerned about their development?

A: With Tuck, I knew from birth something was not right. Being a new worried overly dramatic mom, I was told anything to calm my fears. He rocked himself, he wouldn't know you were in a room sitting inches from him, he would "hum" insistently, food choices were becoming sparse for his choosing as he began to refuse he most favorite foods, holding him was sheer terror (we had yet to learn that our touch to his skin was comparable to razor blades) When he turned one year old, everything changed and I knew I had to trust my gut and hold on tight. He spoke only one word "Dada" for a few months leading to his first birthday. Shortly after he fell silent. He attended a day school and the director there pulled me aside to ask if I had ever had him evaluated. Because Tuck had the same signs of Autism, that her middle son had. She had word from his teacher that something wasn't right. He wasn't like the other children. So she sat in the one year old class as an observant. She knew. I was still fighting my denial. His pediatrician laughed in my face and told me to leave it alone. The same day I changed pediatricians based solely on his reaction. I was going on this journey to help my son, and the last thing I wanted was to be looked at as a fool. Within the month of his day school director asking me about an evaluation, I went and had it done. That's the day I lost my mind. I got angry. I hated Autism. I hid in my shower during nap time that day and screamed and cried until my face hurt. Days later, I was still angry. But for different reasons. I stopped analyzing. I stopped the days and long nights of mind numbing researching. And I got angry. At Autism. If I could see it as a "thing". An object that took son. I would be a force to be reckoned with. And that's where our fight began. Soon after his diagnosis (at 17 months) and my breakdown/epiphany Tuck began intensive therapy. Five days a week five hours a day, and an OT came to our home in the afternoon on certain days of the week, then my homework with him at home so he wouldn't regress. It was literally our every day. We eventually went to our new pediatrician. And he welcomed Tuck with open warm loving arms. He understood. He cared. And our office visits were slow and careful as to accommodate Tuck's needs. That was five years ago, we have been with his pediatrician ever since.

Q: A question from a blog reader..."How do you want me to explain your child's condition to my child? What do you prefer i say?"

A: When explaining to your child about my sons condition, I would say what I tell Tuck about his friends on the spectrum. Everyone is different. Like the colors in your crayon box. Everyone has good days and bad, just like you. Be kind to your friend. Show love. And do not be mean or react negatively. Because you wouldn't want them doing that to you.

Q: What is the best advice you could give to parents who have newly diagnosed children? 

A: I would say to the parents, pull them close. Pull your family close. Pull your friends close. Allow them to experience the good the bad the triumphs and the failures that you feel are your own. You are going to need that Army on your journey. There maybe negativity. I pray for you there is not. But those will eventually come around to your new path in life. Be ready to fill your heart with forgiveness for them. For those who scoffed at you and the diagnosis. It may feel as the most ultimate rejection. I speak from experience on that. This is your child. You are her/his only voice. Share with other autism parents. Listen to their journeys. Learn from each other. Engage with them. But please do not judge. Some of us are further along on this road, while others are still reeling from what is a devastating reality. That we ALL share. We ALL know the feelings you feel. And we are ALL here for each other. Be kind. But most importantly be together. We couldn't have done this without our army for Tuck.

Q: What does Autism look like in your home? (please send a photo of your child) and describe what your average day "dealing" with Autism is like. How ASD affects your child on a daily basis.

A: When our journey began we would accommodate Tuck's every need. Quiet house. I learned to schedule a day like we lived in a maximum security facility. Without the ridged schedule anything would throw him into a fit that would rage for hours. He would loose sleep. Or he would sleep for literally six hour stints during the day. It was crucial to have it all laid out. Play by play. No wavering. It was also incredibly exhausting to say the very least. We learned that some people in our lives were not keen on our way of handling our home. But with time they came to understand when they were present for the repercussions. Consistency and learning through play. That's how we rolled. For the first part of our journey. As Tuck grew and learned to use his visual charts, we had them so he could control and see "what's next" in the day. He would take one visual card down. Place it in the envelope below his chart and move on. This was crucial also as it was used for him in his classroom at school. I'm not saying it kept the cars on the track all the time, but it beat the alternative. Five years have past, and we now use a paper in Tucks room. It lists his daily things he must do. Brush teeth, put clothes away, outside chores, indoor chores, homework, meal time, time for school, etc. Much much more lenient than the first three years. We spend a lot. An incredibly a lot. Of time outside. We live on a farm. So there is always something to do, see and explore. The quiet here has eased Tuck after a hard day. And with the "big kids" (12 year old & 9 year old) up the road from us, that LOVE to come play, they have really changed Tuck for the better. For more independence. To just be Tuck. They accept him as part of their family. And they love him so dearly as we do them. We have our moments of just sitting. And when they happen it warms my heart as to where we have been. Where we began. And the trials and tribulations that got us here. Our home has moments of insatiable laughter. Movie nights. And lots of family gatherings. But I still watch the clock. It's my little habit. My glimpse back in time. To where our journey began. Our lives on this beautiful, wild, sad, happy, ultimately blessing journey through Autism.

1 comment:

  1. Yet another lovely post and insight to this mom's journey and her fight to help her son. Thanks for this project Kayla, these posts help me feel less alone and also find new examples of amazing mothers!