In honor of National Autism Awareness Month, we are featuring interviews with Mothers’ who have a child on the Autism Spectrum. Todays’ interview is with Tangy Williams.
Tell us a little about yourself and your family.
Whew! Where do I begin! My husband and I have 3 beautiful, loving children. Johnathan will be 12 this month (Apr 26), Mackenzie is 9 and my baby boy Peyton is 6. We’re big on books and board games! We love the beach and Dollar Tree! The one thing I love most about my family is how we show love. We’re a touchy bunch! We cuddle with each other, lay on each other and we always give positive/loving affirmations. Our bunch struggles with clean-up time, chores and handwriting but I tell myself everyday I’m going to make a plan, I’m going to make a plan LOL!!
What led up to your child’s autism diagnosis? What were your initial thoughts and feelings?
Johnathan (our oldest) was around 2 ½ years old and being new parents we paid for this ridiculous high daycare which taught him Sign Language and Spanish starting when he turned 1. He was doing great and then it’s like one week he went from counting to 10 in Spanish and signing when he wanted more cheerios to nothing, AND I MEAN NOTHING! He would sit in a corner and not do anything at all. Everyone told me it’s okay boys are different than girls, but I knew something was wrong. I began to take him to a stream of doctors and everyone told me nothing was wrong. It wasn’t until one day I was sitting in the pediatric office and I began to cry to the Doctor. I told him something is not right and I feel it. He said okay okay, I’ll refer you to our Neurologist. We paid what was the beginning of never-ending co-pays and drove to Tampa.
I remember sitting in the room while lil’ Jay was playing with his flashcards on the floor when he was diagnosed with PDD-NOS (Pervasive Developmental Disorder). What in the world are we going to do? What is this? What did I do wrong? I began to think of nights that I was tired or sleepy. Did I lay him down appropriately? Did I give him old milk? Like, this was in 2009 and I’m just going through my head of every scenario as if I was the culprit. I was very sick during his pregnancy, I had an EXTREMELY long birth and I immediately took it as if I did something wrong.
What does autism look like for your child? What does a typical day or week look like for your child? (School, Therapy, Routines, etc.)
First things first, you learn there’s no “typical day” LOL! You make routines, and you provide your “if you do this” then “you will get this” scenarios as much as possible. We’ve been extremely blessed in areas as Johnathan is really a go with the flow type of kid (well, some days LOL). He loves his teacher who is AMAZING! He loves routines on good days and not so good days we just wing it (it’s the honest truth).
He always wakes up first as his sleep-wake cycle is maybe 4-5 hours of sleep (which is really hard). He has breakfast. He dresses himself. He wakes up his brothers and sisters LOL!
At School, Johnathan has tons of support that I’ve worked hard to place on his IEP (Individual Education Program). He has Occupational, Speech, Writing, and Behavioral Therapy. He’s in a small autism unit classroom and is included in specials i.e. P.E., Music, Art and also Reading with the general classrooms. It’s important to me for him to be included with the general classrooms not just for Johnathan but for other children to know that everyone doesn’t think/act or do the things as I do, but that doesn’t make them not capable of doing it. It may take Johnathan longer or Johnathan may need help, but Johnathan still gets it done. So when that other child grows up to be an Adult and ready to hire someone, they can say I had a kid in my class who had Autism. It may take him/her longer but we can hire this person. I hope that makes sense lol.
Can you share one of the biggest challenges you, your child, or family has faced in regards to autism? Can you also share one of the biggest victories?
School was a HUGE challenge and “aha!” moment for me. I wanted Johnathan to be included as much as possible with the “typical” learners, which the school district is not as supportive of this notion as it should be. So I began to have meetings with different school members and the Director of Lakeland Autism Institute (no longer open) to the point that I joined and am a graduate of Partners in Policymaking. The program involves classes and seminars for a series of 6 months that require me to travel and stay overnight in Orlando and Tallahassee to learn, study and develop the necessary skills to become an advocate for Johnathan. We have more power than we know but we must also be realistic with the school system and work just as hard as we’re requesting of the teachers and aids.
I joined my son’s school Student Advisory Council. I began to develop a rapport with the teachers and aids, really ask questions, show up to meetings when they involved Johnathan, which in the beginning I seriously had at least 10-15 meetings with the school board and other organizations to get what I believed Johnathan needed and what I knew was possible.
What is one thing you wished more people understood about autism? How can they be more supportive?
Autism is not who my son is. I loathe when someone says he’s autistic. No! He’s Johnathan who happens to have autism. He’s a person with feelings, emotions, and opinions just like anyone else. When we introduce ourselves we do not say “Hello, I’m pregnant”, “Hello I’m a wife with 3 kids”, “Hello I’m ADHD, Depression” and so on. We say our name and with a relationship others learn who we are. Autism doesn’t make Johnathan, it’s not his identity. So please take away this, that anyone with a disability has just that a disability, its not who they are!
Do you have any recommendations for resources that have been helpful to you, your child, and your family? (Support groups, Educational Websites, Books, etc.)
This is going to sound really weird but at first I immersed myself in everything autism, and graduated from an advocacy class in Tallahassee which gave me a great foundation. But for my journey as a parent with a child on the spectrum I do not want to live that way. So I made the decision to not live by books until I REALLY needed them or messed up LOL! I learn, mess up, do well and adjust with Johnathan like I would with any of my other two children, and look up books for the things I really need. For example, puberty is upon us so I’m reading on that right now. In the past, handwriting without tears have helped but for the most part I’m winging it just like any other mom.
Any last thoughts or words or encouragement for families whose child is on the autism spectrum or has a special need?
Some days are really hard, I think of his future way more than my other two children and at times I feel bad for that because as much as I want to give him “normalcy” he will always need support, he will always need help. I feel so helpless knowing that as I age what will become of my growing huggable son. I trust in God and really speak to Him daily as this is still a struggle for me.
I will say that you’re doing the best you can. There’s no perfect formula, diet, or schedule more important than your child knowing how loved he/she is. My best advice would be to join his/her world first and then he/she will join yours. Focus and zone in on his/her strengths rather than his/her weaknesses. Embarrassment is real and it’s okay, I feel it at times. Be honest with yourself and then THROW EMBARRASSMENT AWAY! I could care less if my son loves and wants cows until he’s 45, if that makes him happy my son is getting his cow!!!!
Tangy thank you for sharing you and Johnathan’s story with the Sincerely, Mrs. Mommy tribe!! And thank you for submitting this idea for the series. You’re an incredibly fierce mother and advocate!
To follow along with this series and the other Mother’s sharing their stories, be sure to subscribe to SincerelyMrsMommy.com to receive live updates to your inbox.