A Fun and Awesome Kid
October 04, 2013
In 2006, we welcomed another baby boy into our family. Luke was born with a shock of jet black hair and a beautiful disposition. He was an easy-going baby, breastfed well (always hungry) and was a gorgeous brother to Jack. For the first nine months of his life, he made great eye contact, engaged with us, was ticklish, giggled, liked tummy time, and played peek-a-boo. At 7 months, he began babbling, making “mama” and “dada” sounds. He was rarely sick, which soon changed.
At 9 months, Luke developed chronic ear infections, and at 10 months he was so uncomfortable lying on his side to breastfeed due to ear infections that he went on strike and I couldn’t get him back on the breast. From age 9-12 months, Luke caught every cold that went through his daycare, and he came down with the flu twice, despite receiving two flu shots. At 13 months, he had a double ear infection, bronchitis and pneumonia. Many doses of antibiotics later, he began to get better, however, his language and motor skills had failed to develop from where they’d been at about 10 months.
At 15 months, Luke received the MMR and other vaccines, began screaming, was inconsolable at the clinic, and fell asleep on the drive home. I put him to bed. It took me five hours to wake him. I still feel sick when I think about this day. What I didn’t realize was that Luke was seizing. He would sit up and then his eyes would roll into the back of his head and he’d slump over. I just thought he was really tired. If I could go back in time and smack myself in the head, this would be one of the many days I’d go to.
We had moved to a new home when Luke was 11 months old. A few months after we’d moved in, I realized that Luke was no longer calling me in the morning. In fact, he was not speaking much at all. When he finally developed a new word, “Yeah!” it was a source of much celebration. He finally walked at 15 months, after cruising the furniture from 12 months of age. His development seemed to be slowing down.
But he was such a good baby, we just didn’t hear the warning bells until his 18-month well baby check-up. At this appointment his pediatrician asked about speech development. We estimated he had three words (although I couldn’t remember the last time he’d actually said “mama” or “dada,” but “yeah” was being used a lot). At this age, children typically have about 50 words. At the same age, his brother had been filling in words in favorite stories we read to him.
Luke was subsequently referred to Birth to 3 (early intervention) and diagnosed with a 40% speech delay. Autism still wasn’t on the radar as Luke was still considered social and made great eye contact. At 21 months, Luke had tubes placed in his ears. His vocabulary doubled the afternoon of the operation and he began repeating words we were saying (echolalia). It was an exciting development! We had been worried he might have autism, but then thought he just hadn’t been able to hear. However, at 22 months, Luke suddenly lost all eye contact, and we were not exactly surprised (although still incredibly devastated) when he was diagnosed with autism at 27 months.
I kind of laugh when I remember myself at this time. I had no idea what was in store for us as a family. I was naively optimistic (a good thing) and decided that Luke was going to be fine, but I was just going to have to work very hard. He would be “indistinguishable from his peers” (whatever that means) by the time he went to school, or so I thought!
My husband and I dealt with the diagnosis differently. He spent a lot of time ruminating on “what did we do wrong?” and “why did this happen to us?” I, however, focused on “what do we do now?” It took me a while to address my husband’s questions.
We enrolled Luke in a new preschool program for children with autism and got on every waiting list available for services. At the time, services related to autism were not covered by our insurance, so that in itself was another blow. We came up with a plan of what to do while waiting for Medicaid-covered services (likely to be one to two years). Two years later, Wisconsin passed legislation mandating coverage for intensive autism services, so we were fortunate to benefit from that.
When Luke was first referred for diagnosis, I called a friend whose child had autism. His first piece of advice was that autism was genetic and I should not listen to anyone who said diet or environment had anything to do with it. He recommended we focus on ABA and OT, and to ignore the many snake-oil salesmen out there. While I don’t think this was terrible advice, it took me several more months to be open to the idea that diet might help and that environment may have had something to do with Luke’s regression. I was really hopeful that therapy would help. According to Luke’s diary at the preschool, he was having “a great day” every day, participating in activities with hand-over-hand assistance. Yet he didn’t seem to be making any progress.
I had found some comfort in meeting parents of children with autism at the preschool, but there weren’t many opportunities to stop and chat. Most of them were racing around with other children and they enjoyed the small break dropping off their kids at the preschool, so they rarely had time. As an immigrant to this country, I had some friends, but I really didn’t have a network of people to lean on in tough times, and we had no family in the area. While my parents and extended family in Australia and my husband’s family tried to be supportive, we felt particularly isolated after Luke’s diagnosis.
I attended my first biomedical conference in November in Milwaukee. It was there that I met a local TACA Coordinator and was invited a new group in Madison. Talk About Curing Autism (Wisconsin) held its first meeting in November 2008. It was great to meet so many parents of children at different ages. I felt supported for the first time, and began attending meetings when I could, which was sporadically at first. It was through TACA that I learned of new research, new treatments, and gained helpful insight into what might help Luke. I also gained so much from my new friends who were happy to help when I needed it.
I put Luke on the gluten-free, casein-free diet the day after November conference. We saw our first progress with the diet. Luke began making eye contact for the first time in months and said his first sentence, “Let’s go to the trains,” after I suggested we go to the library, where there was a Thomas the Train set. We saw regression on the diet, too. It was a learning process. I’d replaced the casein with soy, and it turns out Luke has a significant sensitivity to soy. After we removed soy, we began seeing progress again.
Luke was formally diagnosed again in December (required for our Medicaid CLTS waiver application) by a developmental pediatrician in Madison, who spent some time telling us that there was no reason to believe autism was anything but genetic and to put our child on a restrictive diet was “child abuse.” Despite these warnings, we decided to respectfully disagree and had our first appointment with a DAN! doctor the following day. [The Defeat Autism Now! movement has now been superseded by the MAPS accreditation]. He didn’t promise us the moon, but he did promise to work with us to help Luke. The first treatment we tried was MB12 shots. We were excited after two weeks, when Luke’s therapists all noticed an increase in attention (Luke was able to sit and attend for longer than ten minutes with a book, when prior to this, two minutes was the norm). However, the attention would improve the day after we’d give the shot and taper off for the next two days, as we were giving them every three days. Giving shots every day really helped Luke and we continued to see improvements in language and attention.
I attended the Autism One conference in Chicago in 2009. At this point, I had been spending every night reading obsessively about everything related to autism. I connected with many parents at this conference and asked them specifically what had helped their kids. I came home determined to work harder and talked to my husband about trying hyperbaric oxygen therapy (HBOT).
During this entire time, we’d also been coping with difficult behavior from our older son, Jack. He’d been diagnosed with sensory processing disorder at age 3, encopresis at age 4 (incontinence of the bowel), and had been having significant behaviors at school, with major meltdowns. He finally received an educational diagnosis of Asperger Syndrome in 2009 and Tourette Syndrome in 2011. While the boys are affected by autism differently, they have a lot in common. Jack doesn’t have the significant motor planning and visual issues Luke suffers from, but he is very sensitive to sound and touch, has rigid routines, obsessive-compulsive behavior, and has trouble taking other people’s perspectives and relating to peers.
When we decided to try HBOT, Luke was age 3 and Jack was 6. I was encouraged by a friend at TACA to treat both children, since they would most likely both be with me at the time. Our first dive was a freebie test dive. I have to say it was a bit of a disaster. The HBOT technician gave us a video to watch, but it was the bonus disc and not a movie (not acceptable to my children!). I had two books with me and I panicked, wondering how on earth would I entertain these kids for 90 minutes in the chamber. Needless to say, I read to them very slowly and asked the boys numerous questions, but we stayed in for the full amount of time. After just one dive, Luke responded immediately, and I couldn’t believe it. We had our first back and forth conversation in the clinic right after the dive. He began making eye contact, referencing peers, and responding to his name that weekend. I called the clinic and signed up for 40 dives.
Luke’s response to those first 40 dives was memorable. He had been seeing a speech therapist and had scored in the bottom 1% percentile in most areas of speech. She’d worked on some basic goals for him that had him using verbs by the end of an 8-week session. After one week of HBOT, he went from not being able to use a single verb, to describing every verb she tested him on. I hadn’t told her about the HBOT, so she was left shaking her head. After one week she said, “I think we need to reassess what he’s capable of doing.” During this period, Luke began talking in sentences. After dive #15, he walked up to me, unprompted and said “Mummy, I love you,” and hugged me. For any parent of a child with autism, that was pretty special and it was clearly due to HBOT.
Jack also made considerable gains with HBOT. His facial tics went away after dive #3 (although they returned about six months later), his Occupational Therapist noticed significant motor planning improvement and less sensory sensitivity.
One concern we had about HBOT is whether the gains would stick. Due to financial limitations, we did 40 dives and then waited another year to do another 40, then a further six months to do 20 more dives. Each time we did a session, we saw improvements in attention, processing time, speech, interaction, and motor skills. Luke also potty-trained quickly during the first 40 dives (urinating in the toilet – BMs took a couple more years). Finally in 2012, we bought an in-home soft chamber and we have been able to treat Luke continuously for the past year. It’s been a great thing to have and he will request to go in there every night. We have also used it for my husband after he had neck surgery last year. It made a big difference in his recovery.
Luke began receiving in-home intensive therapy in September of 2009. We used an agency doing a Floortime therapy approach for the first two years, then we switched to an agency using an ABA approach. While Luke made progress with both approaches, he made huge gains very quickly with ABA, and I wish we’d started with this. Nevertheless, the lead psychologist on our team is actually the same person who diagnosed Luke in 2008, although he’s only been with our team for 12 months. He commented about Luke at our last meeting, "I can't get over how much he's improved. I saw him before he had any treatment. He can learn anything."
When Luke was first diagnosed, he had a small vocabulary of one-word requests, would scream to get his needs met, and would constantly engage in self-stimulatory behavior (stimming) when not in therapy (and often during therapy, too). He is now able to have meaningful conversations, has opinions, interests (although somewhat unusual), and is gradually seeking more independence. He is working on advanced ABA programs and our team is incorporating a lot of Relationship Development Intervention (RDI) games. I am learning more about this approach, too.
Luke now has a massive vocabulary, is very intelligent (so much for the IQ of 85 he received at age 2), and continues to amaze us. He has completed four years of intensive in-home therapy and has recently moved to non-intensive therapy, and full-time school. We did a mixture of virtual school for academics and bricks-and-mortar schooling for related arts and therapies last year. This was to ensure Luke received the full four years of intensive therapy he was entitled to through our health insurance.
Luke is still on a restrictive gluten-free/casein-free and soy-free diet. It’s a work in progress, as new reactions to food keep cropping up. However, despite the restrictions, he eats a wide and healthy variety of foods. He’s a big kid. He’s in the 98th percentile for height and weight (he is not overweight). He still has some GI concerns and low tone. We’re working a lot on motor skills and coordination, which are a considerable challenge.
Throughout this time, I began to attend TACA meetings more regularly. In November 2010, I was asked if I’d be interested in becoming a Co-Coordinator of our chapter in Madison. I attended my first leadership conference in January 2011. Being a leader with TACA enables me to help other families, but has also been tremendously helpful to me because of the network of leaders with whom I communicate. When issues arise, they often have excellent suggestions, both behaviorally and biomedically.
Luke has also been on a long list of supplements for the past five years for methylation and mitochondrial support. These have helped a lot also with gastrointestinal and sleep issues. He was diagnosed with cerebral folate auto-immunity in 2011. Dr Quadros, the researcher, actually called me with Luke’s results, which I though was very kind. However, I found out later that it was because Luke’s results were quite severe, so Dr Quadros wanted to know more about Luke’s autism. The interesting thing is that Luke’s autism is sometimes mild, more often moderate. He is not severe, which is what Dr Quadros thought might be the case by his results. Luke has been taking the high-dose folinic acid Leucovorin since his diagnosis, which seemed to help with motor skills and attention.
We attended a Masgutova Neurosensorimotor Reflex Integration Conference last year. I have been trying to do as much as possible of this therapy at home. Luke often requests it. It’s hard to explain, but has a lot to do with the primitive reflexes not integrating properly, leaving our children in a state of protection, which prevents them from developing properly. It’s worth investigating.
Other useful therapies we have tried include vision therapy, syntonic phototherapy, chiropractic, piano lessons and karate lessons. The boys love karate. Jack picked it up much faster than Luke, but it’s so great for them both to have it as an outlet. They need the physical activity and neither is interested in sports, so this is a great alternative. It’s also been really helpful for them both in terms of coordination, auditory processing, and paying attention. We stopped piano lessons as we were having trouble fitting it in, but the boys are both musical and I’d like to try again soon.
Five years after his diagnosis, Luke has made incredible progress. Is he “indistinguishable from his peers?” No, but who wants to be indistinguishable anyway? Yes, he’s different. He’s also a really fun, awesome kid. And we love him just as he is, but we’re going to help him and his brother with whatever they need throughout their lives. If that means total recovery, so be it. I haven’t mentioned Jack much in this piece. He’s also made incredible progress through diet, HBOT and therapy. However, the main treatment for Jack is diet. It’s worked wonders. He is much more able to self-regulate his behavior, his social skills have improved and he’s finally making friends. He’s also off the Miralax that he started taking at age 3. Most people would not realize that Jack is on the autism spectrum.
To give you an idea of how Luke has improved, at age 2 he had an Autism Treatment Evaluation Checklist (ATEC) score of 131, at age 5, his score was 88; and age 7, it was 57. We really feel like we’re coming out of the other side of autism and are focusing on what kind of life we want as a family in the future. So many of our decisions have revolved around Luke’s autism and therapy, it’s nice to have the freedom to move forward and consider the family as a whole. TACA has been a huge part of Luke’s recovery. It’s also been a huge source of HOPE. I know we’re not out of the woods yet, and I will lean on TACA again and again. It’s so good to know TACA is there.