There is one constant in life we all experience other than death: “change.” For our family, change came about in a series of moves, in disappointed expectations, and the redirection of dreams. Our story is lengthy, but it is a story of hope for all children with special needs, specifically autism, and I want to share that hope with you.
"Enjoying Motherhood"
In 2005, my husband, Neil's, job took us on an accelerated tour of relocations across the Midwest. The journey began in WI, bounced us to Missouri, and finally set us down in Iowa. Noah, our first son, was 22-months old when we first detached from our extended families in WI. Judah, our youngest son, was six-months old at the time. It was during the first months in Missouri that I noticed how particular Noah was in some of his habits. He was very systematic in his play and did not like to make messes. In fact, messes upset him. He was very particular where his toys were placed and whether or not the living room was tidy. I was proud that he was such a “clean” toddler. I thought I was a good mom for having modeled cleanliness so well, and I appreciated him for picking up great habits at such a young age. Another dynamic I observed was that his play had become more structured. He created a circular track in the backyard; tirelessly, endlessly, walking his track in the same repeating pattern for hours. I did not understand this form of play. I pondered over my favorite times in my career as a stay at home mom - playing in the inflatable pool, lying on the floor with my sons as they interacted with each other. Now I watched, wondering what Noah was thinking as he examined the same leaf for ten minutes each time he circled his track. I was interested and fascinated, but not concerned …at least, not until his 24-month well check.
"Is He Okay?"
I sat confused in the pediatrician's office as the nurse rattled off the milestone questions for the average two-year-old. "Can he eat with a spoon? Does he say at least 30-40 words? Is he pairing words to make requests instead of just pointing? For example, will he say, 'my truck' or 'cracker, please?'” Noah had always been advanced in reaching his infant milestones. Now he was behind. My mind was spinning, dizzy with concern, “Was I not teaching him what he needed to know? Was I falling behind in 'mommy-ing' my son? No he doesn't eat with a spoon. Why is Noah all of a sudden delayed? He does have a few words; not that many, though. What do I need to do to help him? He asks for milk, but has never pointed to anything to make a request. Is he OK? He certainly has never paired words together. Obviously, I am not doing well enough!” The doctor reassured me that Noah was probably just a little delayed and not to worry. But I was concerned. When I mentioned my uneasiness regarding Noah's delays to Neil, he was curious, but confident, as any proud father would be, that Noah would be fine. "We'll just have to work with him", he said.
We had only been in Missouri four months when Neil called to say the job whirlwind was whisking us off to Iowa. Within two weeks we found a new residence, got out of our lease, packed our belongings again, and settled in as residents of Sioux City. It was the beginning of November when we moved and Christmas came quickly. We decided to take the boys back to Wisconsin to see our family. By this time, Noah no longer spoke any words. He didn't even ask for milk anymore. It was as though he never spoke. He just muttered the same syllables over and over, "ba-ba-ba-ba..." His interest in the toys he played with over the summer had completely disappeared. In fact, as I watched him, he seemed to no longer know how to play with them. There was no attraction to the colorful foreign objects in his bedroom at all. He was content to walk around the perimeter of each room, feeling the walls, and touching certain pieces of furniture as he walked his familiar track, always clockwise. The hardest part for me was the only time he ever looked me in the eyes was when he was screaming with fear and frustration when I tried to get his attention. "It wasn't this way only six months ago," I remembered to myself. Sometimes I tapped gently on his shoulder. Other times I tried blocking his path so I could tell him that it was time to eat. Frustrated, he would try to walk around me, but if I continued to block him, he shrieked and screamed. When he wasn't walking his track he found other ways to occupy his time like banging on the side of the stove...BANG! BANG! BANG! Constant, endless, unrelenting, BANGING. It got on my nerves and each time I tried to stop him he wailed, kicked, punched, and sometimes bit. When we visited our family for the holidays, he was content to just circle the rooms. Some perceived this as "cute, quirky toddler behavior" and others indicated concern, though unsure what to think. Noah's behavior changed drastically over that year and not for the better.
"Hope Delayed"
My sister-in-law, Jenny, has a PhD in child psychology and had some experience working with autistic children. She ever so gently, lovingly suggested that Noah might meet the criteria for ASD (autism spectrum disorder). When we returned to Iowa, Jenny was a huge advocate on our behalf, making calls to our local early childhood organization so that we could begin receiving services. People from the Early Childhood Intervention program came to our home and preformed an evaluation. However, they interpreted everything inaccurately, claiming he had skills that he did not possess. They looked for imitation and language skills and, somehow, both were identified. They told me that Noah was fine, merely delayed for his age, and offered one hour of services through their program on a weekly basis.
I was frustrated. I was determined to identify what was going on with my son and how I could help him. Neil, too, was determined to help Noah, but was not ready to accept the idea of autism until he personally heard the possibility from a professional. Meanwhile, as Noah received his services of one hour every week, I made an appointment with the nearest autism specialist located an hour and a half away in Omaha, NE. After a two hour visit, he confirmed that Noah met all the criteria for classic regressive autism. He insisted that Noah receive forty hours of intense therapy every week. "Push for forty", he said, "If you get 25-30 hours, you're doing really well. If you only receive 15-20, be grateful." He, also, offered the services of the autism center; however, because it was a neighboring state, our insurance would not cover any of it. It would have been thousands of dollars.
"Baby Steps"
We returned home from our day in Omaha with mixed feelings: relieved to have an answer to the mystery of Noah, we could now begin helping him. However, we were still apprehensive, wondering what God's plan was. Would we be able to receive the help Noah needed? Would we even receive ten hours of services every week? Noah was twenty-eight months old when diagnosed with autism. "Now that Noah has an official diagnosis," I thought, "surely I can get more than one hour." Instead of calling the office of Early Childhood Intervention, I went straight to the top. A lady by the name of Jan came to see Noah. She agreed with the diagnosis. I told her one hour is just not acceptable. She must have felt compassionate as she told me of the only program in the whole area established specifically for autistic children: Discrete Trial. It was held at a local elementary school and one opening remained. The only catch was the program was for children age three to six. Fortunately, the school would make an exception for Noah if Neil and I were willing to pursue it. We were definitely willing, anything for our son! Within the week, Noah began his school career at just shy of 29-months old.
"Hope Refueled"
One evening, we hired a babysitter for the boys, so Neil and I could attend a church meeting. Our sitter, Cami, told us that her boss had a son who was autistic and involved in a study for children with autism. The study was seeking a couple more families to participate. Would we be interested? Of course! The next day, I called Cami's boss, Josh, and introduced myself. We briefly exchanged stories and he gave me the contact information for the Celeste Foundation. The foundation received a federal grant to perform a study on autistic children between ages two and six. The study was based in Florida. Other than Florida, only two other states participated in the study: New Jersey and Iowa. Through Neil's job relocation, God had provided the opportunity for us to learn to communicate and reconnect with our son. How providential!
They interviewed a few hundred families. They needed 15. We were #14. We were flown to Florida for one week of intense behavioral training, all expenses paid. We immediately restructured our lives upon our return, applying the techniques we were taught. A couple of days after returning, two gentlemen came to our home and installed a camera in our living room to allow for video conferencing. We conferenced daily with one of the team members, Dr. Danielle Liso, and behavioral analysts Katrina Wilburn-Beckholm and Jeff Hine. During the calls we asked questions as they walked and talked us through various situations pertaining to Noah's behavior. It was helpful to see and understand what was happening in the context of his environment. They were available 24 hours a day, seven days a week. The team taught us how to think from a perspective of a child with autism and equipped us with the tools to communicate with our son. It was as though Noah lived in his own world and we lived in ours. Danielle and her team taught us how to break down the barrier of autism and bring our worlds together.
"Time for Judah!"
While Noah attended school in the mornings, I spent that time with my other son, Judah, who is fifteen months younger. A silver lining this was for Judah! It seemed Noah had received so much attention and now Judah had mom all to his own (and mom got exclusive time with Judah, too!) I really looked forward to being with him, to play and snuggle with my littlest boy. We had the same routine every morning before we went to get Noah from school. We played with toys, played outside, and then I would get his sippy cup of milk and we would snuggle while watching a VeggieTale DVD. Judah wasn't talking yet, but he still had plenty of time. He was very physically active. He enjoyed climbing over objects, into bins and baskets, and onto whatever else he could find. I knew that children who were more physical in their development typically talked later, so it didn't bother me that he wasn't speaking yet. Judah also suffered from frequent ear infections and seemed to be on antibiotics for weeks at a time. I knew this, also, could affect speech, so I was not concerned. Judah was already doing so much more than what Noah was able to do. He played with toys, and at times we made eye contact. I was excited for the day when Judah would talk and model language for his older brother!
"A Sinking Feeling"
That summer in 2006, Judah still wasn't talking, but we were excited that he had begun walking. We put tubes in Judah's ears because of all the infections. "Expect a significant language burst within the next four to six weeks", the doctor told us. We were ecstatic! I couldn't wait to hear words come from his little voice! A month went by; I began to question what a “language burst” was. Judah began flapping his arms up and down like Noah often did. I convinced myself that Judah was just displaying delayed imitation of his older sibling. Judah also loved ceiling fans. He would walk into a room with one spinning and become so wound up he looked like he would explode. Other times he would gaze off into space and "check out". He wasn't aware of anyone or anything around him for minutes on end. When he snapped out of it, or if the ceiling fan turned off, he shrieked, terrified. Calming Judah sometimes took upwards of an hour of solid screaming and crying while I held him in my arms. A sinking feeling set in – a cylinder block plummeting, hopelessly, unyielding into the depths of my stomach.
I frantically began working with Judah, hoping maybe, if I just worked hard enough, that somehow I could reverse what was happening to my younger son or, at the very least, help him catch up. Autism in Judah looked so much different than it did in Noah; however, with Judah I saw it coming … and I couldn't stop it. No matter how many hours I spent with him or what kinds of services were provided, there was nothing I could do to prevent its progression. I desperately gripped the clock's hands, but could not stop the future encroaching. The days Judah zoned out for a minute or two at a time, he became so fearful when he came out of it. I saw the pleading in his eyes, yet he was too terrified to walk into Mom's arms for the comfort and relief he so acutely needed in that moment. I remember sitting in the corner of the room emotionally exhausted, tears streaming down my face, my heart breaking as I watched my little boy in agony, unable to receive my comfort. Sometimes I just had to go into another room and cry while enduring what seemed an eternity of screaming before he could calm himself.
"Take Two"
Since I already had a connection with Early Childhood, I called my friend, Sue, who worked with Noah in school. She knew our family well. With Judah so delayed he easily qualified for one hour every week. Sue would come and stay for well over an hour, when she could, working with Judah and me. Now my time with Judah was different. Instead of just cuddles and playing together, we worked on sound imitation and being engaged and interacting with his environment. The most difficult days were when anything out of the ordinary occurred. It could be the sound of an unfamiliar car driving by, children playing, or even a jacket zipper would upset Judah. When both boys were home, what calmed one often upset the other. Sometimes they plunged into a cacophony of screaming. I learned quickly that if I remained calm and acted as though screaming were the most natural thing in the world, that both Noah and Judah calmed more quickly.
I called the autism center in Omaha again and this time scheduled their specialists to visit with Judah. In January, 2007, Judah was officially diagnosed with classic autism. Before the the Celeste Foundation's study with Noah concluded I had begun inquiring about Judah, as well, during the conference calls. Danielle, Katrina, and Jeff were open with advice and suggestions and continue to this day to be great support for our family. Just knowing that they are available has been a huge comfort.
"A New Direction"
With minimal services and support in the area for our boys, I was overwhelmed. Although I had a pretty good grasp of the needs of our sons, Neil and I needed more support for our family. We began our search for new places to live by briefly looking at various countries before realizing the US was already the hotspot for research and services. I narrowed our search by calling the Department of Education for 30-35 states. Most were proud to inform me that they were performing some cutting edge research; however, they were not yet equipped to provide services. I found myself asking, "How is cutting edge research going to help my sons right now?" Many states flat out said, "You have children with autism? Don't come here." After days of research, hours on the phone, and more hours online, I found that Texas and New Jersey were rated two of the top states for programs, services, and opportunities for more education pertaining to autism. Although I love the east coast, we decided on Texas thanks to its beneficial cost of living and planted our focus there. Neil took trips to Texas to meet with potential employers, using one week's vacation in the spring and another in the summer of 2007. I helped him from Iowa, scheduling interview tours that would take him through Texas' four major metropolitan areas during each trip: Dallas, San Antonio, Houston, and Austin. The first trip was in April and nothing came from those interviews. The second was at the end of July. While this trip seemed more promising, Neil returned home without an offer. Fortunately, once back in Iowa, Neil received and accepted an offer from Dell Computers on August 2. One more time we played relocation roulette, securing a new home online and packing our belongings.
"Implementing the Unknown"
The boys became nervous and easily stressed, not understanding what was happening while watching our things be packed. We decided it best for the new residence in Texas to be ready to receive the boys when they arrived; feeling as familiar to them as we could make it. I would stay with the boys at family's back in Wisconsin while Neil set up home in Texas. The trip began - Neil drove the moving truck to Wisconsin and the boys and I followed in our vehicle. Noah, Judah, and I stayed for a week with my parents. After settling the boys into an environment in which they were somewhat familiar, Neil continued the 24-hour drive to Texas alone. Once in Austin, Neil met with our landlord to obtain the keys for the house and proceeded to unload the 24' moving truck on his own. He began unloading the truck on Monday, August 27 at 2:00pm and finished on Tuesday at 2:00pm. He put everything away and set up the boys bedrooms and playroom. He then flew back to Madison on Thursday, the 30th, and we all drove to Austin together. As a family we arrived at our new home on September 2. Neil started his new job that following Monday.
"Transitioning and the 'In-Between' "
Although, Noah and Judah had been used to moving so often, this particular transition was a little more difficult than the others. Every move came with its own stress, but the past moves transitioned from beginning to end within a day or two. This move was physically impossible to accomplish in two days. This one took seven days. Noah recognized moving trucks at this point. When he saw the moving truck in front of Papa's house in WI, he became anxious. He continued looking out the window, wondering when we were going "home". Explaining to him that we were going to stay with Papa until Daddy came for us was unavailing. His apprehension only grew when he actually saw his Daddy pull away from the house in the moving truck with all that was familiar, leaving him behind with his mother and younger brother. The week dragged on forever. Both boys played contentedly, for the most part, except during the time each day when Daddy was typically a part of their familiar routine. In the evening, Noah looked all over Papa's house for Daddy to play with him. Judah waited for Daddy to hold him with his sippy cup in hand before taking him to bed. Each morning following, both boys walked around the house looking inefectively for Daddy. Finally, at the end of a very long week, Daddy came back!
"New Beginnings"
So excited to be together again, the 18 hour drive over two days seemed inconsequential. Once we arrived at our address, we were so happy to enter our new home and see our belongings placed neatly in each room. There were no boxes or packing materials on the floor or counters. Noah and Judah were giddy with excitement when they saw their own beds in their perspective rooms. The playscape outside became an outlet for laughter and pent up energy to be released. Sleep came easily that night. The boys needed about two weeks to adjust to a new home. Because this move was a little more involved and stressful, we expected some regression from Noah and Judah. During these two weeks of adjustment, Noah did regress again. He didn't speak during that time, and he fell back into his own little world. It was as though he had forgotten his words all over again. This time, Neil and I were prepared. Immediately, we set up a daily routines for both boys. Patiently, we worked with each one as we had in the past, using pictures to communicate and repetition to reinforce meaning. Withing 2-3 weeks, what was "normal" was returning. Both boys needed to be re-evaluated to qualify to receive services in the state of Texas, and having all school records and paperwork was an advantage. Within the first six weeks, Noah started school again, and Judah was participating in the ECI program for Texas. Our lives were beginning again.
"A Work in Progress"
It has been two and a half years since we first set foot on southern soil. We thoroughly love living in Texas! The boys are attending special education classes in school and are doing well. Noah is six and is talking again. He is able to respond to one step directions (ie: "Noah, get your coat"). He doesn't understand two step directions yet (ie: "Noah, get your coat, and put it on"). He is very bright, academically. He has been learning on the computer since the age of three. He has been able to reconfigure the operating system (not for the better, necessarily), download software programs, and enable the internet card after it has been disabled. Currently, he has been learning to read by sight at school. At home he has a favorite website he uses to teach himself phonetic reading. We think he has a photographic and, possibly, an eidetic memory. He sees and hears something one time and he is able to remember and repeat it. Judah is five and is still learning to talk. He is beginning to imitate sounds and small words. He continues to be very physically active and has amazing proprioceptive awareness and abilities. He is able to balance himself on almost anything. He is both cautious and fearless. He, too, has an incredible memory and great problem solving skills. He is very "hands-on" and loves to play in the water.
"Adventures Ahead!"
As Neil and I ponder over the last few years, we can trace God's leading hand in our lives. He has taken the broken pieces from our lives and begun to create a mosaic of His beauty. With each relocation, heartbreak, and tweak of our plans, God has placed us in position for a greater adventure. He has been awakening and preparing our hearts to expand our family for the purpose of reaching out beyond ourselves in order to embrace those who need and desire love. As a family, we want to extend our hearts to those who are broken and hurting by welcoming them into our home and lives, to love them to wholeness and strength with the love of Christ. It has, also, become a passion to embrace children with special needs in order to share hope for their future. One way we are seeking to do this is through adoption. It's a perfect picture of how God loves us. He takes us as we are, with all of our "special needs", no strings attached, and loves us. It doesn't matter where we are or what our history is. He envelops us to wholeness. How can we not be changed by this amazing love?
