It occurred to me after being invited to be the parent at an upcoming Autism Panel where I would have to share our story that I had never actually blogged about it. I've told the story what seems like a thousand times to various people. So, here it goes, this is our story of autism:
We have two beautiful sons born in August of 2001 and November of 2003. Our family moved to Southern California in February of 2004 so that my husband could take a job at NAVSEA working at the Port Hueneme Naval Base. Jonah was 2 years and AJ 2 months old. The first 6 months that we lived here, my husband traveled for 3 of them. I tried to acclimate to the new environment, new neighbors, get out and meet new people. I tried mom’s groups, play dates, you name it. We went to the beach; after all we lived there what a great life right? It was all such a struggle. By July I had told my husband and myself that it was time for me to go back to work. I was convinced I wasn’t cut out to be a stay at home mom. I just didn’t fit in with the other moms. My kids didn’t play like the other kids, and I thought it was just me.
By the Fall of 2004 I had gotten a job and the boys were going to preschool and daycare about 20 hours a week. Jonah attended First Presbyterian preschool in Oxnard for about 4 months when the preschool suggested we have Jonah evaluated by the schools. Sure what could possibly be wrong with our first born? He’s talking, he’s walking, and he’s a sweet loving little boy. So we set an appointment with the school psychologist in our home school district to have him evaluated. Have both just started jobs, we decided to tag team these meetings, our biggest rookie mistake.
So, since he was closer my husband attended the meeting with the psychologist and I dialed in for a conference call. She asked us questions and towards the end light-heartedly added that “Dad is an engineer and mom is into Computers, he’ll be fine”. At the time that was a comment that at the time we didn’t understand the humor or the value of. At the end of the call she told us she would also evaluate Jonah and write up her report and be in touch. A few weeks later we were invited to a meeting to review the findings from the psychologist. The preschool teacher, school psychologist, speech therapist, and many others were in attendance. This time it was my turn to show up to the meeting, so Joe went to work as usual that day. It was our first IEP – and we didn’t even know what an IEP was. Sure they covered the formalities of sending us forms and setting the dates and times. However, I had no idea what I was walking into. I was told that day by the school district that my son had autism and that we should consider getting in touch with the Regional Center as their diagnosis and the supports they could provide would be different. Until that day in early 2005 we had no idea that the Regional Centers existed, that our child had developmental delays or that our lives would forever be changed.
We worked through the spring and summer of 2005 to find placement for Jonah and we moved to Camarillo where he began attending the preschool program half days and attending day care. We also worked to get Jonah evaluated by the Regional Center –which also gave us a diagnosis of autism. We were setup with Respite and Daycare funding and no other real therapy. The denial in us told us the preschool was enough. After all, Jonah could walk, talk, and was a sweet boy.
Over the summer the boys had completed their time in Oxnard at the preschool and just as we began to breathe a sigh of relief that Jonah was finally taken care of and we could get on with our lives – we realized something was wrong with AJ. Between 12 and 15 months his vocabulary was developing and increasing. He was saying things like cup, drink, eat, square, circle, triangle, and rectangle. Between the ages of 15 and 18 months AJ began to lose words. By 18 months, everything was a rectangle – we joked that it was his battle cry. By 24 months he had stopped talking almost completely and no longer even said rectangle. Luckily we knew the drill, but it didn’t make it any easier. I realized that for myself I had been willing to accept the diagnosis of my second son, but only on my own terms, and when I received it via email rather than in a face to face meeting with the Regional Center psychologist I was devastated. It was the first and only time I cried about autism at work.
Over the course of the next 6-8 months my husband and I went through alternating stages of acceptance and mourning. Still plodding along with IEP’s, preschool schedules, parent training, and whatever we could get our hands on and muster the strength to try. AJ began receiving an Integrated Behavior Intervention (IBI) program, and upon turning 3 years old also began attending the school district’s early intervention program. He has since moved on to an Applied Behavioral Analysis (ABA) approach. It became difficult to prioritize the two as AJ’s case seemed so much more severe that Jonah was put on the back burner. How do you prioritize the needs of two children with special needs? There is no easy answer we still struggle with it to this day.
In the 4 years since receiving the diagnosis for both of our boys we have had the opportunity to learn from many wonderful people, teachers, therapists, parents and others. We have learned to acknowledge that we as parents are in control of our children’s future and we must guide them to the right resources and have the dreams and goals for what their future looks like. It may not be the same dreams and goals that we had for them when we first held them as infants, but having a child with special needs changes you and the person that you once were.
We have continued to do interventions with our boys above and beyond what the schools or the regional centers, or even our pediatricians have been able to provide or recommend. When we haven’t received the level of openness and support from these providers we have moved on to those who were willing to listen and let us be heard. Among these interventions have been Gluten Free/Casein Free diet, Blair Chiropractic, and also other bio-medical interventions in the form of supplements with the help of a DAN Doctor. We would never tell other parents these things will definitively work on their children. The most important point to be made is that no one knows your child better than you know your child. You must find the resources to educate yourself and advocate for your child.
Our family has progressed tremendously and our boys are both of our boys attended early intervention preschool and a Special Day Class Kindergarten, they are both fully included in 2nd grade and Kindergarten respectively at our home school. Every day is a struggle and a challenge, but it is also a blessing and a gift. In addition to the boys we have a two year old daughter who is typical and are expecting a 4th child in 2010. Our struggles are not over, they are ongoing and life-long. What makes the experience easier is knowing we have experience to share that enable to help other parents and allow them to struggle less based upon our trials and tribulations, and to give a big thanks to those parents who have gone before us to make our lives easier, helped to blaze a trail and who have been willing and able to mentor and teach us as well.
