06/06/2022
We met this amazing advocate family at Dollywood two weeks ago and they are awesome!
C loved catching up to Jackson after a ride and talking with him about the roller coasters. I loved seeing a family like ours enjoying their day out for fun!
People often ask, did you know Jackson had autism?
From the time my son was about a year old I started expressing concern to our pediatrician:
There I was a first-time mom pleading and arguing toe-to-toe against “The Dr.” that all of my friends used, raved about, and loved, but he wouldn’t budge to help me. “His words are gone, he isn’t babbling, he zones us out, he hardly enjoys toys, he hardly eats.......”, I felt like my words were coming out as if I were Charlie Brown’s school teacher; he looked at me with little response or concern. As I’m begging for referrals, testing, and answers I realized in that office that this was only the beginning of a very long road of being Jackson’s advocate against the world: doctors, school officials, therapists, complete strangers.
I also realized at this point that doctors would not lay out your path, it would be the other special needs moms who have walked before you, and those who are traveling this journey right along side you.
We finally were in the “referral zone” on our evaluations and were able to begin speech therapy services in home, and then by chance the nurse practioner saw us at our well check and referred Jackson to a neurodevelopmental pediatrician which had a wait list of ONE YEAR!
Later that day the “Dr” called to yell at me and his NP for writing the referral because my child was “just a boy, he would speak when he was ready, I’m wasting my money, I’m chasing a diagnosis because there was nothing wrong with my son, I was just a first time mom” and the kicker “your child is not autistic, he doesn’t flap his fingers in front of his face”
Livid doesn’t even begin to describe my feelings, he was right, I was a first time mom. But that is the only thing he was right about, I was a mother who for 6 months had been begging for help, for answers, for someone to understand that what was happening to my son was not “normal”.
So five months went by and FINALLY we were seen by a Dr. The NP from “The DRs” office had mentioned speech apraxia when he wrote our referral and that was a diagnosis we could wrap our heads around as parents, because my experience with autism up until that point was minimal and that "just couldn’t happen to me". So I went to the appointment without Sal, I was pregnant with our second child so my grandma went with me for extra help, I mean after all we were just receiving an apraxia diagnosis so I didn’t’ want Sal to waste a day off..... and then it happened.
One word changed our life forever, autism. I’ll never forget what I wore to that appointment, what the Dr wore, how many times she checked her iphone on the counter, what Jackson was doing at that moment.
I watched as my life tore in two pieces like a piece of notebook paper: life before autism, and now life with autism. I cried, one of those from the depths of your soul, curl up and crumble to the floor cries because you realize in that moment nothing is every going to be easy for your child or your family again, the future for all of you just became a complete unknown.
Will he ever say “Mama”, will he be able to go to school, will he ever make a friend, will he tell me he loves me? And here I am pregnant with another baby and how are we going to be able to give them both what they need when this Dr who just gave me the hardest news of my life can’t even help tell me what to do next.
Do you know what she offered me? A booklet, about “What autism is, and how to deal with your grief”. I will say that how to deal with the grieving process of a special needs diagnosis is real.
A huge part of the grieving process is denial. “Maybe that other Dr was right, Jackson doesn’t flap his hands in front of his face, there’s no way he has autism”. My husband told me all along I’m sure he’s right, he’s just a boy, he will talk when he’s ready.
Well as we sat in this denial phase from our diagnosis for about two weeks; Akron Children’s called and they had a cancellation, and we were at the top of the list... This was our chance, Sal was taking the day off work to go with me and we would go see this new Dr. who was the head of the entire Neurodevelopmental department and she was going to tell us Jackson had speech apraxia.
Well she went over the mountain of paperwork we sent in months before, she observed Jackson for a length of time, she interviewed Sal and I, and then almost word for word she delivered the same autism diagnosis as the Dr had two weeks before. Hearing those words again, as a team, kind of forces you out of denial, and into the beginning phases of acceptance.
Unfortunately, again the Dr said keep doing speech therapy, you could TRY the gluten free/ casein free diet I think we’ve had some moms have success with that, and there may be play therapy or something in your area, see you in 6 months.”
When we finally accepted we now had a child with autism I decided we needed to reach out to other families with autism to figure out what the heck to do. And from one meeting one mama changed my life forever, and changed who I was as a mom.
She walked into my home, sat down at my dining room table and said “I am not ashamed of autism”, do you know what I was before she said that? I was ashamed of autism, because I thought/or knew that every teacher, friend, mom, relative, etc. looked at me and judged me because I had a child with autism, this was my “fault” and we were “ different”.
Let me just say what I couldn’t see then: A child with a disability can happen to anyone. No one is exempt, or special, or “protected”. And once it happens to you, you start to recognize what it’s like to be the Head Grizzly of the Mama Bear family, and what it means to advocate like hell to serve this beautiful, brilliant child.
I will never be able to thank that mother enough because truly with that one statement she forever changed how we went about this journey. She told me exactly what my son ate because her son ate the same things, she told me to get him into ABA and I looked at Sal and with a nod we both agreed that’s what Jackson needed and that’s what we were doing; and I just couldn’t believe NONE of these Drs had told us this yet, I felt like we had wasted so much time the last 4 weeks working on his diet, speech therapy,PLAY therapy, introducing a PECs system, tumbling classes, 2s group, swimming lessons because we hadn’t yet tried ABA.
Mind you we were doing all of this on literally NO sleep, with little guidance, and still pretty quietly.
My son was non-verbal until the age of four, he didn’t sleep through the night until he was nearly five, and didn’t eat a vegetable until he was almost 6, and he never opened a Christmas gift until just this past year. As we approach his sixth birthday next week- he talks, he loves school, he eats carrots, he loves trains and dogs, he’s asked for a Santa Fe Diesel engine since Christmas and tells me “maybe for your birthday”...... we still have our struggles but the progress is amazing.
These past four and a half years we have learned so much about: p**p, iep’s, sleep, diet, advocacy, supplements, ABA, PECs, sign language, sensory integration, etc. It is definitely not what I thought I would be learning about in my late 20’s, but boy do I feel blessed to be with Jackson on this difficult but beautiful ride.
I now know my purpose in this life was to help spread knowledge, understanding, and compassion, for those parents who have brilliant blessings like our Jackson.
So, never give up! Never be afraid to reach out to another mama, and know that you are doing amazing!
