Akshay’s Story: There is No Such Thing as a “Window”
October 23, 2012
On March 21, 2002 my dreams to be a mother became fulfilled. I gave birth to a beautiful boy and we named him Akshay, in Sanskrit it means “everlasting.” I remember calling his name right after delivery and watching his little cap covered head flop towards me, hearing the sound of my voice. It was the best moment ever!
Over the next year he reached his developmental milestones. We heard Mama and Dada when we should have. He never did hand and knees crawl as he preferred the commando crawl and then switched to walking at 10 months. By his 1st birthday he was already trying to perfect his running style. Akshay could recite his numbers, say his ABCs, sang, danced, and laughed. He was so easy going, loving and giggly. I always called him the “mellow one.”
At 9 months we had our first foray into food allergies. We were visiting family in Canada and my aunt gave Akshay a piece of 9 grain toast. Within the hour his cheeks reddened and a rash developed. My cousin, a doctor told me it was a sign of wheat sensitivity. When we switched to milk at one he began coughing after he drank it. At his one year check up I asked the doctor to do allergy testing. Akshay was allergic to wheat, eggs and dairy and had slight asthma. I wasn’t entirely surprised as my brother had the same allergies at that age and I had asthma at 6 months. So we switched to soy milk and eliminated the other allergens.
At fifteen months (June 2003) is when the nightmare began. Akshay had contracted hand-foot-and mouth disease from a friend’s child (who we didn’t know was sick). He woke up with a 102 temp and had terrible sores in his mouth that made eating and drinking impossible. Doctor told me rest and fluids for him. A week later we were in the pediatrician’s office for our 15 month check up. Akshay still had the sniffles and I knew he wasn’t 100%. When it was time for the shots I asked the doc if it was okay, of course the answer was, “Sure.” I wanted to protect my child didn’t I? Vaccines are meant to protect him right? Wow, was I dumb.
Within three weeks Akshay’s language stopped progressing. He no longer wanted to count or say his ABC’s, if you tried to sing with him he covered his ears. Akshay’s loving, mellow, gentle nature was gone. His behavior changed to uncontrollable crying, hitting, and bouts of explosive anger and complete need of a rigorous schedule. When he was awake Akshay never stopped moving, just constant hyperactive movement. We couldn’t go places with the fear of him taking off on us. When we left our apartment we had to take the same path every time so that he could touch certain objects on the way. The worst moment for me was when he stopped dancing and laughing. I witnessed it first hand when he sat in front of the TV with a blank stare watching Bear in the Big Blue House. He used to laugh loudly and roll on the floor when Bear used to push his nose into the glass and to “smell” Akshay. It was gone. I remember one day giving Akshay a slice of cheese pizza and the cheese separated from the crust and he had an hour long meltdown. I held him while he was crying and I began to cry too. I looked at my husband and said, “Something is really wrong.”
We were told various things for nearly two years, “Your husband was a late talker, and he probably is too.” “Oh he‘s a boy, he’s just hyper.” “You’re making something out of nothing.” The something manifested itself fall of 2005 when I attempted to put Akshay into pre-school. He was there one hour when the school called and told me I had to come get him. “He keeps running away, he’s hit other kids and staff. He’s not ready to be here.” I felt like the worst parent ever!! Finally I went to our pediatrician, “He got kicked out of school for hitting. We’re tired and frustrated!! He keeps hitting us, attacking his little sister when she cries, and we can’t get him to talk.” The doc ordered a hearing test which he passed with flying colors.
Next was a speech assessment, we found out at he was at an 18-to-24 month level and Akshay was almost 4 years old. The therapist told me I should ask for a neuro consult, “To make sure everything is okay.” What I didn’t know was that she saw all the signs of autism in my son before I even knew was autism was. Akshay was lining up trains, repeating the same things over and over again and had echolalia. When my doc called to tell me he was going to refer me for speech services he asked me if I really wanted the neuro consult. “No” I said, “not unless you think we need to.” His answer was no, he didn’t think it was necessary.
Well we ended up needing for one week after Akshay’s 4th birthday he had his first seizure. Our ped ordered an EEG and we had to wait four months for the neuro consult. During those four months I researched seizures on the internet, autism kept popping up so I started looking into it. Then I found the Autism Checklist that asks you to answer 32 yes or no questions, if you answer yes to 27 or more then there is a possibility your child has autism. My heart just sank, I answered yes to thirty!
On July 2, 2006 we finally found ourselves in the Children’s Hospital neurology office. The doctor came in and said, “I see here you want to talk about seizures.” “No” I said, “I want to talk about Autism.” After 90 minutes and Akshay showing every possible side of his behavior the doctor gave me the AUTISM diagnosis. “He’s going to need speech, OT, behavior therapy, social skills and school. When he gets older you’re going to have to think about putting him some place like a group home.” Then she proceeded to write all this on a prescription pad, handed it to me and told me to come back in four months. Did she tell me to put him somewhere?? Four months?? Do I turn this paper in somewhere and they will have all the answers? I was I complete shock but also relieved because now the something had a name: AUTISM.
I had put Akshay in a summer program with his sister two weeks prior to the appointment. After the diagnosis I told the school about it. The director told me there was another parent with a child with autism at the school and that she had told the director if there was another parent in need to send them her way. The director gave me her phone number and I called her that afternoon, she wasn’t home, but I left a message. The next day at drop off I had a packet waiting for me, inside was info all about TACA. “This group has really helped me” she wrote” I know they can help you too.” There was info about the new parent seminar and screen prints of what to do next and how to find resources to help. All this info was a godsend.
In August of 2006 Eddie and I made our way to our first TACA meeting. Lisa welcomed us with open arms and a hug. At the beginning of the meeting she handed me a packed three ring binder The Journey Guide, little did I know but I had just been handed the only guide I would ever need. The meeting was about social skills and playgroup and I remember thinking,”Oh my God, other kids won’t want to play with my kid? The school district isn’t going to help us?” and on and on. Eddie and I kept looking at each other and both coming to the realization that we had a HUGE road ahead of us. Eddie left mid meeting to go outside and calm down, I felt like I had been hit by a truck and couldn’t stop the tears. I’m sure Lisa had seen this look from hundreds of parents before. At the end of the meeting she hugged us and told us, “You’re not alone anymore.”
We spent the next month being assessed by our school district and regional center. We had two super scary incidences of Akshay escaping out of our home in the early hours within 10 days of each other. The first time he was naked, made it five long blocks away and was luckily found by a woman that was driving by. That was Anaheim PD’s first visit to our home. The second time he pushed a heavy dining chair up a flight of stairs to jump up and open our chain lock (newly installed due to the last incident) and made it over a mile away. Anaheim PD picked him up while I frantically ran down the street in my nightgown calling his name. When they got us home the officers asked Akshay to open the door and he showed them how he did it. The two officers stood there, mouths hanging open and essentially told us to get a better lock; they still filed a report with CPS though.
My main frustration with the Autism journey was that everyone made me feel like was too late. Regional Center made it pretty clear when I called requesting an intake, “Oh he’s four…we don’t give speech and we don’t have many services for him at that age.” Are you kidding me?? He‘s danger to himself and our family!! I looked into many programs when I felt I wasn’t going to get what he needed from the district. Again I was told too old etc, it was super frustrating. The only thing we had to start with was the speech the insurance was paying. I just wanted to be able to sleep through the night without worrying that I was going to find Akshay gone. Screw “early intervention,” I just wanted any intervention that this point. I wanted him to stop hurting himself and others. I wanted to be able to go out without having a steel tight grip in his hand, he was getting bigger and the stroller wasn’t going to work forever.
I went to TACA’s Autism Journey Seminar on Oct 2006 and learned everything I could. I joined every Yahoo group; got a parent mentor, read every book I could get my hands on and signed up for every local conference I could go to. I’ll be honest bio-medical wasn’t my first concern. Getting him into school was first and then getting ABA from RCOC. After much haggling and frustration Akshay finally started pre-Kindergarten in March of 2007 and we finally got approved for behavior services in June of 2007. In August of 2007 we finally started with our first ABA agency and Akshay started Kindergarten.
We still had a lot of problems. Akshay had explosive anger at school and was sent home at least once a month for hurting someone. We couldn’t leave him alone because he was the escape artist or trying to hurt his sister. I moved him to our room to sleep so that I could keep an eye out for him if he woke up. We also still had the seizures as Akshay had a grand mal at school.
Life was slowly but surely getting better though. I didn’t worry about getting hit so often, his speech was coming back and we finally got him potty trained. We were able to go to Disneyland without a stroller, without him eloping and he had only one meltdown that he calmed himself from. In June of 2008 he actually sat through his entire Kindergarten graduation. When he went up to get his certificate he told his teacher, “Miss Amanda I did it!”
I had an autism burnout from early 2008 until Oct 2008. I felt autism was just too big for me to handle. We couldn’t go out like “normal” people, couldn’t relax and always had to be on guard. Going to family parties found me miserable and tired afterwards because I had to chase after Akshay the entire time so he wouldn’t hit anyone or break anything. It was all just exhausting and overwhelming mentally and physically. When I finally went back to a TACA meeting by chance had showed up to the Recovered Kids meeting. There I heard stories that gave me hope and encouragement. I remember at the end of the meeting crying to Lisa because I was just completely over whelmed. She told me to come to the office on Monday and that we’d talk.
I found myself in TACA office on Monday crying my eyes out to Jen and Lisa but I felt better. I found renewed hope and formed a new plan with my new parent mentor. I used every resource TACA had and was at every meeting from that point on.
Dec of 2009 I suddenly lost my job and with it my PPO insurance. I didn’t allow myself to be deterred and marched ahead, January of 2009 we went full force bio-medical. I realized Akshay was a carbo junkie and going gluten free was the only option. I spent a little over two weeks eliminating casein and gluten from our home and turned into an avid label reader. I was going to Coffee Talk at the TACA offices where from Julie and Sharon I learned recipes and all about supplements. I applied for a TACA grant to get an educational assessment done because our tri-annual IEP was coming in April and he was in a terrible placement at school. Within three weeks of adding more supplements and being GF/CF/SF Akshay’s speech just grew. Akshay would normally ask what I was doing and then just walk away, now he started asking follow up questions. We used to have a two minute conversation with him, now we could have a 10 minute conversation with him. One day he told me “I love you mama” without being prompted and on another he said, “I’m hungry.” Akshay was a little calmer and a little more content. At school his aggression went way down and in May he actually posed for his school picture. He was willing to try different kinds of food and expanded his menu.
I received the Pac Life grant from TACA in April for the educational assessment. That assessment opened my eyes. I had a very smart kid who could take tests and discern patterns but I also realized that he was bored at school and hence all the problems, it broke my heart. He was going to only make 2 out of 27 goals. Thanks to the assessment we got a great increase in services and an awesome summer and fall placement.
Akshay is now almost 7, loves his Wii, spaghetti and his little sister (most of the time) and is in the 2nd grade. He likes going to school but doesn’t like homework but he has already hit 10 goals out of his 50. Akshay has only had one meltdown at school since June and they solved it without calling me in. He has made lots of friends in his SDC class and outside of his class and loves inviting them to play tag or soccer. His laugh, his smile and his dancing are back. Is Akshay recovered? Not yet but we are getting there.
We will get there with support from our family, friends, doctors, therapists and TACA. There is no ideal “Window” of opportunity with autism, the window opens the moment you take that step towards recovery. Autism used to be a big word for me in bold capital letters AUTISM. Now it’s not so big and not so scary, it’s lost the bold and some of the capitals more like AuTism. I’m going to have TACA make a shirt for Akshay when he graduates high school, it’s going to read, "My parents were told to put me in an institution…They are… it’s called Harvard. I am recovered thanks to them and TACA.”