Brenda Wilson's Facebook status on Tuesday, March 25 read: "'Love is ... raising a child with autism.' She has not slept well these last few days ... which means Mom hasn't slept well either ... but, somehow, I am able to get up and find the strength each day ... praising God:)"
That sums up this Martins Ferry mom's attitude about dealing with the formidable foes named autism and epilepsy that snatched Addy Grace, who was a typically developing baby at 9 months.
Addy is now 4, the daughter of Brenda and Brett Wilson and the little sister of 10-year-old Abbey, a fourth-grader at Ayers Elementary.
Autism families are tireless warriors for their children's well-being, because they have to be. Brenda has won many battles on Addy's behalf and it shows in the improvements the 4-year-old has made over the years. She receives therapy at Silver Linings in St. Clairsville. Her diet - free of gluten, soy, dairy, egg, sugar and grains, and including a variety of supplements - costs upwards of $700 a month, but it, along with other therapies, has helped.
Whatever helps, is Brenda's attitude. While her therapy fees are covered, to afford the rest of her care regimen - including trips to Connecticut to see Wheeling native Dr. Nancy O'Hara, an expert in autism spectrum disorders - Brenda has placed donation jars in businesses and held benefits. She and her family have declared bankruptcy, and she has even stood shamelessly on a street corner holding a sign with Addy's picture that states: "She's 3. She's amazing. She's my world. Help her beat the odds!"
In honor of Autism Awareness Month, we talked to Brenda via email about Addy's struggles and triumphs, and Brenda's dogged determination to win the war against autism.
OVP: Describe Addy's behavior before and after the autism and other disorders set in.
Brenda: Addy's journey into autism began very early. As a baby, she was different compared to my firstborn. Addy developed severe eczema early on; she always seemed to have lots of tummy troubles; she would fuss a lot. ... Despite these things, though, she was a typical, happy baby. She babbled a lot. ... She had the best eye contact. She'd smile and babble while reaching out and touching my face and looking into my eyes with her big ornery smile. ... Addy also loved her bath ... and her growth and development were right on track.
But then, in October 2010, Addy went in for her 9-month well visit. She received several vaccinations that day. Within the hour, I started to notice something "off" about her. ... She seemed very spaced-out and confused. ... On the way home, I remember hearing her suddenly start to fuss and she had this loud screeching cry that I did not recognize. ... In the next few months, ... Addy seemed very tired all of the time and very lethargic. She didn't play much, and she seemed to be sick all the time with colds and double ear infections. ... Despite not feeling well, Addy was still meeting milestones and starting to walk.
Just before we were to celebrate Addy's 1-year birthday. I remember thinking, "Wow, soon I'll be making plans to potty train, looking for a preschool and even heading back to work." Never in my wildest dreams did I imagine the turn we were about to take in life.
A few days after celebrating her birthday, Addy went in for her well visit where she received several more shots. A few days later, my stomach got a sick feeling as Addy was playing on the floor and began to scream and cry. This was the same cry I'd heard months before. It wasn't the "Mommy, I'm hungry cry" or "Mommy, I need my diaper changed" cry ... It was the "Mommy, something terrible is happening to me!" cry. ... She was having a seizure, and she just kept having seizure after seizure after seizure. She was taken to the local ER for tests and then sent to Nationwide Children's Hospital in Columbus for more tests. After having the EEG done, it revealed that Addy had epilepsy. In fact, she was seizing so bad they could not pinpoint which part of the brain the seizure activity was coming from. The neurologist said: "It was like bombs going off all over the brain."
Addy was given the standard protocol of anti-seizure meds and sent home. ... Everyone said she'd be fine because epilepsy was totally treatable. But days and weeks into the first part of our journey, Addy wasn't getting any better. In fact, she was getting worse. She was having upwards of six seizures a day and meds weren't stopping them, and I was noticing that she wasn't her usual self anymore either. She didn't play at all; she would just sit and stare at walls. There was no smile, and no life in her glossy little eyes ... it was as if something came in and sucked her soul completely out of her. It was definitely one of the worst parts of this journey, watching her slip away ... little by little.
One day though, a dear friend told me about the ketogenic diet. I researched it like crazy and on a whim decided to take Addy off of her meds and implement the diet. To my surprise, Addy's seizures went from six/day to four/day to two to none. It was such a relief, such a huge weight off our shoulders. It was a victory. We are in the clear ... or so we thought.
Addy 's seizures had stopped, but now, the autism symptoms began. I'd call for her and she'd act like she couldn't hear me. She was crawling into walls, as if something was wrong with her vision. I noticed she didn't play any more except with the same thing over and over again. She would no longer look at me, and she became very fearful of water. And she was quiet - very, very quiet. She had stopped babbling. ... It wasn't just her behavior or her milestones that were coming to a halt, but her growth had begun to slow as well. Addy, who was previously a healthy baby girl, who never had issues with her weight, was suddenly losing her weight. Despite how much food I fed her, she continued to lose. She was once a chunky little baby, but now she was being diagnosed as "failure to thrive."
Addy was considered pretty young to have autism, and it really wasn't talked about much, though it was always on the back of my mind. Because of the epilepsy, she qualified for the county's Help Me Grow program, where she was evaluated and found to have some red flags for autism. Coincidentally, we had applied for disability assistance for Addy to help offset some of the costs of caring for a child with so many special needs on a single income. Addy was sent to so many specialists for an evaluation before finally being sent to a psychologist and child development specialist who would diagnose her. So in July 2011, at 19 months old, Addy Grace was diagnosed with autism. It had taken about four months to get the diagnosis.
I remember just feeling numb for a while, just having to take it all in and feeling overwhelmed, just in disbelief that this had happened to me. I began to research autism like crazy. I remember reading Jenny McCarthy's book, "Louder Than Words." It was the first book I'd read (on the subject), and I read the entire book in one night. And that night I felt a sense of hope. I knew what we'd do: We were going to get our daughter back, no matter what the cost!
OVP: Describe the steps you have taken to help Addy, including special foods, treatment, therapy, etc.
Brenda: While Addy was getting her much-needed applied behavior analysis therapy, occupational therapy and physical therapy, I was busy researching autism. As luck would have it, a biomedical doctor (Dr. O'Hara) was visiting the area and discussed ways to treat children with autism with a more natural approach. I remember getting chills at hearing the possibilities of getting my baby girl back to full health.
One month later we started our (recovery) journey. She took many supplements, went on an even more restrictive diet, which was all organic, gluten, soy, dairy, egg, sugar, grain free. And right away, she began to gain weight. Her seizures were less and less frequent. We also started to do things to improve her immune system, such as detoxifying the body, and we were seeing good things in Addy. But the expense would continue to mount each month. Her special foods would be upwards of $400-$500, her supplements $300 per month, plus purified water and the expense of transportation to her therapies all add up. Insurance doesn't pay for any of it and we are on a very limited income. But you better believe I'm not going to let a little thing called money stop me from making sure she gets what she needs to beat this! I'll do whatever it takes!
OVP: Would you share some high points and low points?
Brenda: Addy's had a lot of high points lately. She is now self-feeding with a spoon and fork, she is independently walking up and down the stairs, and one of the biggest I think has been her ability to sit in a tub of water for more than an hour. I look back and remember the struggles with that. She'd scream and throw herself as if she were literally being tortured. And now to be able to sit and watch her enjoy her bath, to splash the water and to play with her little boat in the tub - that is amazing. ...
Looking back at the lows: when she was failure to thrive, when she had no smile or life in her eyes, when she would just sit and stare at walls. I remember thinking this cannot be her life ... it just can't be ... and it won't! She's come a long way, and we still have a ways to go.
Addy has just begun speech supplements that will target her brain and reduce the inflammation causing seizures and in the process help her to finally say that first word. Praying, praying, praying all of our hard work will pay off. Because Addy was so young when the seizures and autism began, she never had words, so like any other mother who dreams of sitting and having a conversation with her child, I wait for that glorious day... and I will not stop until we get there.
I am a mother in search of my daughter's voice and this is my mission. She looks at me all the time and makes sounds as if she wants to say something and when she is so happy, I know she just wants to sing about whatever it is that makes her so happy... so, For the Love of Addy Grace*, we will not give up!
OVP: How has big sister Abbey been affected?
Brenda: Considering everything, Abbey has been great. At first, when there were a lot of seizures, it was hard on her. She was sometimes very worried around her because sometimes you never knew when a seizure would come on. But lately, especially since Addy has had so many gains, she has been taking the role as "big sis" and is able to do more with her now, actually play with her - which is all she ever really wanted. It's definitely hard on big sis because raising a child with special needs can take up a lot of parents' time and most of the budget, too. You don't mean for it to happen like that, but it happens, so Brett and I like to take turns doing special things with her.
OVP: Do you have any advice for parents of small children who suspect they have autism?
Brenda: I definitely think the earlier you catch it and diagnose it, the better off the child will be. If you suspect your child may be delayed or have some other, obvious red flags, then definitely talk to your pediatrician about your concerns so they can make the proper referrals. You know your child better than anybody!
*Brenda has a Facebook page by that name to keep family, friends and supporters up to date on Addy's progress.