I’m looking across the dinner table at my now 6 year old daughter navigating two IPads while eating. Most parents are amazed at how the time flies by with their little ones. I am most amazed at how much she has taught me. At age 40 I had this little girl and went through all the normal transitions of going from a life where you do whatever you want, whenever you want, to one dictated by late nights, crying (both me and the baby), and feedings. Six months into our transition our lives changed, her life changed, and our “normal” was changed forever.
On the day of her 6 month vaccinations we landed in the ER with 108 fever and seizure activity. The doctor says “Let me guess…they gave her a whole bunch of vaccines at once? We see this every day.” That part of our conversation made it seem like what was happening to her was routine, however after the fever subsided they were very concerned that she “was acting herself” before they let us go home. It’s harder than you would think to determine this at 6 months of age. She was lethargic, which they said was normal after seizures, and she went through several hours of absence seizures. We were sent home.
After we were sent home we noticed changes our little girl. She had been holding her own bottle since she was a few weeks old and had recently started self feeding with a spoon. Now she seemed to have an aversion to using her hands for anything. She used her fists to hold a bottle. She no longer used a rattle. She was no longer able to use the spoon. She was also very “spacey” which we learned was more seizure activity. She started making growling noises. The baby babbling that we associate with a baby’s attempt at talking stopped. We lost eye contact. She was obsessed with anything colorful and\or spinning. She could play with the twang of the spring door stoppers forever. The only way to calm her was through colorful animation and music. We were scheduled with neurology at Barrow Neurological Institute at Phoenix Children’s Hospital. They had a three month wait list to be seen. During that time I continued to research on my own what was possibly causing seizures and this behavior.
During that three months I started researching her symptoms. What was causing her seizures? I had read that soy could cause seizures and she had suffered a lot of gastrointestinal distress from the day she was born and had been put on soy formula early on. She couldn’t even tolerate breast milk. I decided to discontinue soy a couple weeks prior to see the neurologist and during that time we saw no more seizure activity.
The day of the neurology appointment the doctor assessed her and ordered an MRI. She said she sees this a lot with the DTAP vaccine and she believe this was what caused her reaction. She said not to vaccinate again with DTAP. She told us that some of her patients that experience this get better and some go on to receive and autism diagnosis, epilepsy diagnosis or both. Since we had seen a decrease in seizure activity she said she hoped Samara’s brain would continue to heal and she would be fine, but only time would tell.
Samara did not get better. In fact shortly after we saw the neurologist the stimming began. She would sit in her jumper and lift her legs , with her muscles contracted, up and down over and over until her face was red and she was sweating. She would do that same thing on her back, doing straight legged leg lifts, and scrunching up her face. This was not seizure activity as she was aware and you could tickle her and it would stop for a second. We had contacted early intervention, which frankly wasn’t much help. They did do an assessment which was just a lot of questions, that lead to an “at risk for autism” result that we could take to our pediatrician. There was a 6 month wait list to see a developmental pediatrician. Samara was diagnosed with “classic autism”, the most severe form of autism, in January of 2013 at age 2.
This is a very abbreviated version of our diagnosis journey. The amount of uncertainty, our own and the doctors, and friends and the information we consumed during this time is dizzying. It was like she was born, and then she had autism. Everything in those two years in between was such a whirlwind.
During the following years up until today she has received 45 hours a week of therapies. We have spent thousands, most of which we did not have, to care for her and help her heal. We have and still are searching for the best interventions and biomedical treatment for her and she has made great improvements. We have not had any evaluations to tell us where she is on the spectrum since that original diagnosis, nor do I want to pursue that. I just keep looking forward.
Samara wakes up very happy. More happy than anyone I have ever seen honestly. She chatters away holding her hand in just the right position by the side of her face just catching her peripheral vision. I don’t understand everything she says but I pickup some words here and there. When she is done she moans with a big grin on her face and I say good morning. We have been working on greetings for awhile and she now has “good morning” down pat, when she’s ready.
After she gets up every morning we give her supplements. She takes a topical methylcobalamin which helps her focus. Without this her stimming (self stimulatory behavior) goes from a part time job to a full time job. It could take her several minutes to get a across a room because she’s too busy with hand gestures and vocalizations. She gets a liquid vitamin supplement called Restore which is for digestive health, leaky gut syndrome. Without Restore she has problems with constipation and she will also lose her ability to speak. Our newest supplement is NanoVite which increases glutathione, decreases inflammation and acts as a liver detox. Her receptive language has improved considerably with this. She just recently started tolerating a shower instead of bath which makes the daily routine so much smoother. After her shower we work on dressing which has just recently mastered. “Find the big hole” was our most recent success on helping her understand where her head was supposed to go and she can finally manipulate the shirt somewhat to get it on without too much assistance.
During the day she spends a lot of time with academic apps on her Ipad. We work on more structured activities as well that focus mostly on life skills. We have spent a great deal of the years taking her out into her world, stores, parks, the zoo, restaurants, traveling to another city, staying in a hotel. This was good, bad and ugly at times and still unpredictable to this day.
She had suffered some regression in speech in 2015, but has been slowly recovering. You cannot communicate, as in a back and forth conversation with her, but she can label things, ask for help, point to things she needs. She has had an improvement in receptive language, or she is getting really good at guessing, its hard to say for sure. She has added some sentences to her repertoire this year which we are very excited about. She has greatly increased in eye contact which was recovered naturally. We did not do a forced eye contact through therapy. We don’t believe in forced eye contact, or teaching scripted answers for “social skills”, or stopping her stims. If these things change it will be of her own natural growth and progression. The chewing that people seeing during the teething months just never stopped for her after teething and she would chew holes in her clothes, but that has also subsided with biomedical intervention. She is fully potty trained as of two months ago. She still has vocal stims, mostly from excitement/visual over stimulation. Her meltdowns have subsided to tantrums. She has regained the use of her hands although she is still struggling with fine motor in this area.
She started RDI therapy in April this year and that has been the best thing ever for our entire family as we have exited the state’s funded intensive ABA program. We homeschool and she still goes to speech, occupational therapy and music therapy. We are finally taking back control of our lives and being a family again, connecting, growing and at times it’s almost like we are meeting each other for the first time. 🙂 It’s a beautiful thing.