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Our son Tristan was diagnosed with autism just before his second birthday. With the severity of his diagnosis falling in the moderate to severe range, the prognosis was devastating. Often times, children given this diagnosis are eventually institutionalized and independent functioning we were told was unlikely. Autism is a neurological disorder characterized by significant difficulties in communication, social interaction, and behavior. Children with autism often exhibit repetitive or stereotypical patterns of behavior such as arm flapping and toe walking. They are often non-responsive, lack social reciprocity and highly resistant to even slight changes in routine. When we heard this, all we could think of was the character played by Dustin Hoffman in the movie Rainman who also had the same type of diagnosis as Tristan. All of the dreams that we had for our little boy just evaporated.
There would be no play dates with friends, little league ball, or carefree days playing at the park. These hopes were gone and replaced with the fears of would he ever communicate or function independently. How I just wanted to hear my little boy say, "I love you mom." Would he ever feel love for others or care if others loved him? My heart was breaking.
We first noticed issues developing shortly after his first birthday. Tristan has what is referred to as regressive autism. He developed as normal for that first year, even said several words but then lost them. After that first year, it seemed like someone flipped a switch and our once sweet, smiling, social baby became a completely different child. Tristan was in his "own world". His days consisted of running circular laps around the house and screaming incessantly. Our games of peek-a-boo and patty-cake that we played so often during his first year gave way to relentless fits of screaming. The screaming would begin for no apparent reason and he was inconsolable. He could not speak, did not use gestures, or understand anything that was spoken to him. He had no means of communicating his wants and needs. He would bang his head in frustration, often times on the marble fireplace surround until he bruised his head. He bit his hands repeatedly until they were bruised with his teeth marks. His tolerance for pain was much higher than normal; a characteristic of autism, so feeling pain did not deter these behaviors. The behaviors became more and more self-injurious and we could not stop him. Tristan did not make eye contact with others or interact, not even with his family. He had no sense of danger and could not be left alone in a room for even a minute. This made many every day tasks, such as taking a shower and cooking, somewhat of a challenge. Transitions and changes in routines would result in complete meltdowns. The extent and duration of his frequent tantrums made a typical 2-year-old tantrum look mild. Tristan lived alone in "his world". Our inclusion in social settings became difficult due to his severe behaviors and the invitations ceased. Even Christmas and other family gatherings were difficult as Tristan melted down in a group of people, even family. Social situations became torture for us all. Autism is not only a lonely world for the autistic child but it also isolates the entire family.
We knew there had to be a way to reach our little boy and somehow help him. We were excited to find that state programs provide therapy. As a young middle class family with Tristan's needs necessitating my staying at home, this came as welcome news. Hopefully this would be our answer for help. Unfortunately, upon meeting with the coordinator of the county program we were told that Tristan would be provided only two thirty minute sessions of speech therapy per week.
On our own to find help for him, we found an intensive therapy program called Applied Behavioral Analysis (ABA) which teaches the child specific skills by breaking the skill into several small tasks which are taught systematically and then correct responses are positively reinforced. This therapy had been clinically studied with phenomenal results. Based on 40 hours of one-on-one therapy per week, 47% of the children studied achieved gains that made it possible to function with typical peers independently. Some even lost their diagnosis of autism. The children from the original study were followed through school and remained indistinguishable at age 13. Other researchers had also replicated the study. We were certain that this program would offer Tristan his best chance of overcoming these disabling issues that we were dealing with daily.
Hardly able to contain our excitement, we met with the county coordinator to talk about what was necessary to start an ABA program right away. At approximately $50,000 per year, ABA therapy is an expensive program to implement. The county would not provide any financial assistance and only offered the 30 minute sessions of speech therapy two days per week. We were also told that we would not find ABA funding assistance anywhere in our state. Our group health insurance denied both ABA and speech therapy coverage. A fund was established for Tristan at our church but it was still not sufficient to cover Tristan's needs.
In addition to Tristan's therapy needs, his medical issues were extensive. Frequent illnesses included serious infections of strep and staph including scarlet fever. Testing revealed an immune system dysfunction and severe vitamin deficiency. Lab work indicated that Tristan's body could not break down traditional vitamin supplements and special vitamins were necessary. Allergies to certain foods, food additives and dyes limited our purchasing to more expensive organic items. Gastrointestinal problems had plagued him since his first year and required frequent monitoring and medication. His combined ABA and medical expenses are a staggering $60,000+ per year.
Our concerns of how we could meet the needs of our little boy were mounting... Desperately searching to locate assistance, we finally came across a program in another state, which offered partial ABA funding. We needed to be residents of that state before we could get acceptance into the program and moving our family out of state, not knowing if Tristan's therapy would be funded was going to be a big risk, but for his sake a necessary risk. The younger the child when therapy starts, the better the outcome. We were frantic with the sense of urgency as our window of opportunity to help Tristan was closing fast. With no other options to obtain the treatment he needed and Ray still looking for a job transfer, I left the support of family and friends and moved out of state with Tristan and our three-year-old daughter. Although frightened to move alone, I knew I had to get help for Tristan.
Agreeing to partially fund his ABA program, the county staff were supportive and encouraging. Tristan was also provided speech and occupational therapy. Within one month, we had moved, recruited, interviewed and hired tutors (mostly college students) and his therapy had begun. He improved almost immediately. As a mom, the first few days of ABA therapy were very difficult. Language meant nothing to Tristan so meaning had to be taught. To teach this concept, the tutor began by asking Tristan to "come here". When Tristan ignored the command, the tutor (sometimes it took two to make sure that Tristan did not hurt himself by flipping over his chair) would carry him as he kicked and screamed and physically put him in the chair. A toy was then given to him to positively reinforce his sitting in the chair. This routine was new for Tristan and the meltdowns were continuous. I would stand outside the room and cry. I just wanted to open the door and stop the demands being placed on my little two-year-old. We listened to our consultant who told us before long he will get through this and he will understand our words. We did survive those first few days and we did reach him! Within just a few days, when we asked him to "come here", he would come and sit in the chair and get a toy. That was our breakthrough! Therapy was working and he was beginning to see how fun it was to learn. In the meantime, Ray was still desperately trying to transfer and after three months accepted a demotion and a reduction in pay just so that he could join us.
Tristan's progress began almost immediately. He began saying words within a few months and within one year he could say short phrases and communicate his basic needs to us. We were thrilled with the progress but yet another obstacle awaited our family. When a child turns three, the child is no longer eligible for county services but instead the school system takes over the responsibility of services for children with special needs. Tristan turned three in January of 2002 and even though the therapy was working and he had made incredible gains, the school system would not cover ABA therapy. We had heard that funding was possible in yet another state which meant moving once again. We were disappointed that funding was now even farther away from family as we had always hoped to move back home. We discussed our family situation and decided that Ray would ask for a transfer (which was very unlikely, as work and the economy were slow) and we prayed for direction on our next step. Within one day Ray had an interview to transfer. To obtain funding, we were limited to living in a specific county, which would mean a daily 2 hour commute each way for Ray, but at least it was feasible. Ray was offered a position and was told that he needed to report to work almost immediately. Within two weeks, we had moved our family once again. This time even farther from the support of family and friends. After meeting with the school system in our new city, we once again were blessed with partial funding and began again the process of recruiting and hiring new tutors. His therapy resumed within a month.
At age five, the school system discontinues coverage of ABA therapy. Tristan has just turned five a few months ago and should start kindergarten in the fall. He is not quite ready at this point and will likely need another year or two of therapy before he begins school, giving him the chance to "catch-up". Tristan has made enormous progress! He is flourishing in a preschool class of typical peers and needs little assistance from a tutor who attends school with him as a shadow aid. He is now talking in sentences and conversational skills are developing. How my heart melts now when he runs up hugs me tightly, as his little voice says, "I just love you mom". The child who once was withdrawn and incapable of interaction with even his own family is so very involved. His sister is a favorite playmate and he even has a best friend who comes over for weekly play dates. After working 40+ hours per week, he spends most of his spare time drawing. He is very particular about his art and always steps back to make sure it looks just right.
We are on our way to having our child back. As hard as we were working to reach him, he has worked that much harder to reach us. There are still obstacles but we are continuing to see marked improvements daily. Without ABA therapy and the resolution of his biomedical needs, I know that Tristan would not have reached his potential. He would have been fated to dependency as his earliest physicians had suggested and all of his opportunities would have been lost.
This journey has been a long one, and it is not over yet but his phenomenal progress has made it all worthwhile. By telling our story we hope that it will encourage others struggling with these same issues and that it will bring needed changes for the thousands of other families just beginning their long, lonely journey in battling autism.