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Recently, a friend sent me a podcast of a mom who had not one, but two children diagnosed with Autism. It was the story of her journey. My friend asked my thoughts, I replied, it was good; but her journey sounds nothing like mine. I friend then replied, “So, tell me your story.” So here it is:
When my baby was born, I felt so blessed. We had been waiting several years to have a baby. Then, like many new parents that blessed feeling was overcome with sleepless nights and as luck would have it, a colicky baby. Despite the lack of sleep, my baby boy X was absolutely beautiful.
At our 9 month well visit our Pediatrician asked a few questions and then proceeded to give me a form to fill out. The nurse called me the next day, “Your son seems to have some delays. We are giving you a referral to ECI” With very little explanation of this Early Childhood Intervention, I took down the phone number.
As a new mom, when he wasn’t rolling over, was slow to learn to sit up, or didn’t match the “Baby Center” definition of typical development, I took note. My family all said stuff about every baby developing at their own pace. So I was concerned, but no one else was. We had a healthy and beautiful baby. Even the doctor seemed to be pushing us off on someone else.
An ECI evaluation showed a 40 percent gross motor delay. We started some very basic Occupational Therapy home visits. After three months, X met his goals so I stopped the home visits.
Then, other issues had started to arise: mostly sensory and eating related. He had started refusing to take a spoon after I attempted to move up to chunky baby food.
For his entire life I had made cute, healthy, organic homemade baby food. I didn’t understand if I was doing everything by the book, why was he refusing to eat? The OT told me that babies with gross motor delays often have delays or less strength in their tummy muscles. So I started treating him like he was three months younger in regards to food. That helped… for awhile.
Our pediatrician was no comfort or support… so I moved on. I found one who told me I was a good mom and gave me useful suggestions and guidance.
But the delays continued.
- He didn’t walk until he was 17 months old
- 18 months he started throwing epic 45 minute inconsolable fits.
- By 2 years old and he said maybe 5 words.
- Also at 2 years old the food battle got real… he quit eating, lost weight, and we had weight checks, food diaries and such. The doctor concluded… feed him whatever he will eat and lots of it. I said goodbye to my hippie dreams of a kid eating fruits, veggies and quinoa. I traded that for peanut butter crackers and protein shakes.
- By 2 1/2 the phobias, fears and anxiety peaked. Fear of loud sounds, fear of water, fear of small or unfamiliar spaces. We stayed home more. I became more isolated. Why would a child who had never had any trauma be experiencing such fear?
Out Pediatrician recommended a developmental pediatrician, but our insurance was… let’s just say… a joke.
We filled out paperwork for the developmental pediatrician. This was heart wrenching. Every question they asked pointed directly to an issue we knew was there. His whole life laid out on paper.
This began the waiting game.
Waiting for an appointment.
Waiting for Insurance approval.
And the rabbit hole of internet research.
This entire time family and friends never really saw the whole picture.
“He will get there.”
“He is just being picky.”
“His dad was like that when he was little.”
“All kids go through phases like that.”
“You are just not being strict enough. With my kids I…”
While this was intended as support, it made me feel like I was overreacting. Or worse, just not cut out for parenting. I must be a wimp, I thought.
Around age 3, I had enough waiting. I paid for an evaluation myself from a private OT. It revealed specific areas of concern. I couldn’t afford the private therapy. My pediatrician suggested I do one or two sessions and use the information to give him OT myself. And that’s what I did. Sensory table play, fine motor skills, playing ball, working on words. That’s summer my house became a therapy center. To the outside observer it just looked like I was being super mom and created a preschool at my house.
Then the waiting was over, at age three and a half we had an appointment with a developmental pediatrician and an evaluation from our public school.
As we approached the Developmental Pediatrician’s office, we saw the four story building and cringed. A trip up an elevator that brought X to tears and filled him with fear. The tiny office filled with people and noise was too much. The doctor saw him in all his messiness. After an hour or so of evaluation she asked about our purpose. We stated that we desired some sort of diagnosis’s that our Insurance would cover therapy. She said she would need a follow up visit to confirm, but she felt very comfortable saying X had autism with obsessive and restrictive behaviors.
The days that followed were filled with tears: mourning the loss of the life I thought and dreamed I would have. At the same time rejoicing. Rejoicing over the fact I wasn’t overreacting. I wasn’t a bad parent. I wasn’t doing it all wrong. There was a reason for his behavior, and it wasn’t me. This lifted a huge weight of guilt off my shoulders.
The weight of guilt however was replaced by fear of the long journey ahead.
My husband was very supportive. He went to every doctor visit. But still he was very quiet and didn’t have the same reaction I did. He saw it as a problem we could fix. Problem, solution, we got this.
My family didn’t really understand either. My dad insisted that we start saving money for X’s long term care. He feared the “what if” he could never work or take care of himself. Those thoughts never crossed my mind and seemed a bit overboard. I was still focused on paying for the short term expenses.
In contrast, my sweet in laws didn’t see any problems. Just their beautiful grandson. He was fine. They let him be who he was, but didn’t talk much about it. (Please note: they are some of the few people I’ve trusted to care for X overnight or for long periods. So their relaxed, “He is fine” method actually works for the most part.)
However, I had a few close women from my bible study group who soon would understand. Our ladies bible conference, IF Gathering, was two days after this appointment. It only took a few worship songs, a powerful speaker, and a few to the point conversation cards to tear open every wound for my journey. The tears poured out… in public. My brokenness was obvious. But my pain became the shared pain in our table group.
We had a follow up visit a month later. Followed by a evaluation from our public school. They agreed with the diagnosis.
We started a PPCD program, a special education preschool type program, at our public school. We started receiving support and School based therapy.
The approved private therapy center was an hour and a half away. After repeated appeals to our Insurance… I fired them. I switched to a higher cost plan my job started offering. To balance the cost, I dropped my husband from my plan.
At age 4 we started pre-k with inclusion support and weekly OT and Speech at school and additional weekly private OT. I could write a book on this exhausting process. But we finally had a plan and a goal.
Our journey didn’t end there. There was and is more to come. Follow up appointments, therapies, teacher conferences, evaluations and re-evaluations. Insurance battles and finding creative solutions. But only one goal: improving the quality of life for our child and our family. And I will say, it has improved. We have new and different struggles, but that initial search for a diagnosis is over.
At the same time, I didn’t shout from the rooftops his diagnosis. It took a good year before I could speak it out loud without choking up. I refuse to believe that my child is defined by a diagnosis, but he is better understood because of one. I didn’t long for the label…. but I needed it.
“We have labels that are tied to funding. We have labels that are tied to resources. But the only label you (the Teacher) should be focused on is that they are YOURS. They are your kid.” – My superintendent speaking directly to our public school teachers
My journey may look different than your’s. My story may have different elements. But the truth is: pain, loss, and life’s struggles, are universal. It just varies in shape and form.
But suffering is optional. – Mark Twain
Whenever possible, choose joy.
In the midst of this crazy journey, We somehow are managing to raise a beautiful, smart, kind and funny boy. We have wonderful memories. And where the was pain, there was often even more love.
My prayer is that wherever you are in your life’s journey; you find joy, peace and hope. That you may have a tribe of family or friends who will get down in the muck of life and pull you up. And if you need that, I’m here. Tell me your story.
When we listen to stories, there is no room for stereotypes…. This is a Kingdom way to live, because instead of labels and categories, we begin to dwell in actual humanity. – Shauna Niequist in Savor
Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!