A lot of people will write about their birth story. The documentation of a life event that will never be recreated the exact same way again. There is power behind that sentiment. The bonus that comes along with those birth stories is that it gives others, who either won’t or haven’t yet gone through that, a chance to read about some of what it feels like or the possibilities ahead. This got me thinking. Just as no birth story is the same, no diagnosis story is the same. Maybe this story will make someone who is wondering if they should call a little more comfortable doing so. Maybe someone will find comfort in the fact that someones story is similar to theirs. Maybe it will give them the courage they need to start the journey. Maybe it just makes some feel a little less alone. All worthy reasons, in my opinion, to share our story.
My son, R, was born December 13, 2011, seven pounds and eleven ounces of pure deliciousness! I was ten days past my due date when the doctors induced me. My pregnancy had been pretty typical with only a fetal heart arrhythmia that corrected itself before I was even full term. My labor was just as typical except for the continuous vomiting throughout (sorry for the TMI). I was lucky and had no postpartum depression and an extremely involved husband. We went to all of the typical pediatrician appointments through the first few months and R was developing right on track.
It wasn’t until when he was around six months old that I felt like something wasn’t quite right. I was still getting the updates in my email from the baby center that tracked your baby’s growth every week from conception through toddlerhood and I started to notice he wasn’t hitting every single milestone. It’s not like he was behind, after all he was only six months old, but still something felt off. I asked the pediatrician about his development and he reassured me that there were only a few things he wasn’t doing yet and boys typically developed on the later side of things. (This would be a sentiment I would hear a lot from family and friends.) He was one of the leading experts on Autism and we just happened to like his other philosophies which is why we picked him for our pediatrician. Even though I knew if anyone was going to pick up on something it would be him, I continued to ask if there was any tests we could do or evaluations we could run. He would always say, “if he’s not doing at least one new thing by the next appointment we will talk about it.” Sure enough he would be doing just one more thing. As time went on the further behind he became.
I called my cousin to chat about some of my concerns. She is my go-to person for all things parenting because her boys are a couple years older than R and she always gives great advice. I had brought my worries up to her before, but very briefly and casually. I couldn’t tell if it was my old hypochondriac tendencies breaking through or if there was actually something to be worried about. This time she told me “I think deep down you will know”. The reality was that this did feel different. I did feel like I “knew”. She had a friend who had her kids evaluated by our county’s early intervention program and she said she would send me the phone number to call. “Don’t feel silly for calling, at the very least it will put your worries to rest if it’s nothing and it’s free so there’s no reason not to call!” she said and she was right.
When I got the phone call back from the early intervention department called Early Steps, they were slightly surprised that the call came from the parent as it is usually initiated by the pediatrician or the school. She scheduled our evaluation, to be conducted in our home, for a few weeks from now. This was only to determine if he qualified for the larger, more formal evaluation held at University of South Florida (USF). The anticipation wasn’t so bad because even if she agreed that he wasn’t meeting all of his milestones I figured there was a pretty clear game plan for catching him up which was all I was looking for.
The evaluation was pretty informal with her going back and forth with asking me a bunch of questions while giving R a series of instructions or toys and seeing how he would respond. It took around two hours. At the end she gave me his preliminary scores. Out of the five categories he only passed one. One. Right. I knew he was behind, I was the one who called after all, but even with that it was still a punch in the gut. She told me she would call within the month to schedule his formal evaluation at USF and to plan to be there for around three to four hours.
By the time his formal evaluation rolled around (they have 30 days to call to schedule and then they have 60 days to complete the evaluation) R was around 18 months old. We learned we were expecting another child at the beginning of next year so even more than before I wanted to know what we were up against. We walked into the large building on the campus with a giant waiting room. It wasn’t super busy so the room seemed even bigger and even more intimidating. They called us back to the evaluation room. Sterile like a doctors office but with a couch and a small play area on the floor. There were five people other than us in the room, all there to evaluate a different area. Like the last evaluation, they asked a series of questions, but this time they made it clear that they would try to get R to do things and ultimately even if I had told them he could do them, if he didn’t do them that day in front of them that they would have to say on their report that he could’t do that skill. Along the way most of the therapists would comment on the fact that R would pass a portion of the test category and not the other so they couldn’t give it to him as a correct response. They also mentioned at a later date we could test him for Autism. At the end of the evaluation they gave us their preliminary report. Global Developmental Delay or GDD. As with the last evaluation he would pass one out of the five areas of development. From here they set up our Individualized Family Support Plan or IFSP and told us to expect a call from our case manager to set up once a week, in home visits, from what would be our new (and first of many) therapists.
In the couple months after the big formal evaluation, while we were waiting to start in home therapy a lot had ensued. R had to have surgery to repair a hernia and he started preschool. I also brought our results from USF to our pediatrician. He was nothing short of shocked, but at the same time didn’t seem thoroughly convinced. I asked him who I could bring R to for an evaluation that he would respect the opinion of enough to feel certain of where we stood. He suggested Dr. Danielle Sutton, a leading psychologist in our community and published author on the subject of Autism. I made the appointment with her that day.
Dr. Sutton came to our home to conduct her evaluation in hopes to see R in his environment to get the most accurate picture. She was the perfect combination of beautiful, spunky and professional. During the evaluation she used the words “perplexing” and “interesting” a lot. I wasn’t sure if that was a good thing or a bad thing. Like the therapists from USF, she also said he tended to pass a portion of one test and not the rest. She remarked that she hadn’t quite seen anyone like R before. Again, was that a good thing or a bad thing? On the one hand it gave me some hope that maybe we weren’t dealing with Autism and maybe it was something less intimidating, but on the other, if there is going to be something wrong with your kid you want it to be the textbook case. In the end Dr. Sutton would give R the diagnosis of Autism Spectrum Disorder or ASD with the hopes that it would allow him to receive the services he needed to reach his fullest potential, but as she would put it, “He meets the criteria for the diagnosis, but I’m just not sure in my heart of hearts that’s what we are dealing with.”. I wasn’t quite sure what to tell myself. We decided to keep the diagnosis to ourselves and to his teachers. If he was so different than any of the other children she had seen maybe it would just take some therapy to catch him up and he wouldn’t need the Autism label after all. I wouldn’t want to tell everyone he had Autism and then have to go back later and explain that he didn’t.
Dr. Sutton suggested we have R evaluated for Sensory Processing Disorder as well as a full speech evaluation. A woman named Dana Johnson, an Occupational Therapist, is who she suggested to take him to for the Sensory Processing Evaluation. Dana came to our house to do the evaluation and explained SPD (Sensory Processing Disorder) to us. She was petite, but moved like a gymnast and had a soft, but firm and knowing tone to her voice. I had never heard of it before, but the way she explained it not only made a lot of sense, it sounded exactly like R. After her evaluation she also gave him a diagnosis of SPD. She suggested seeing him once every other week only because her office was 45 minutes away from us, but also getting him started with as much occupational therapy or OT as possible. Marci Cheeseman was Dr. Sutton’s suggestion for speech. Really it was clear by the lack of words R was saying that this was a no brainer, but we had to be formal about the evaluation. Marci was a firecracker. I had and still have never seen anyone work for a word as hard as she does. She truly feels, with great depth, the set backs and successes of her clients and that is something very special in a therapist. She had room in her schedule to start seeing R twice per week.
We took all of the evaluations to our pediatrician for his review. I definitely felt a shift. Finally I felt like he respected what I was saying and that my concerns were a valid thing to look further into. We started on supplements specifically designed for individuals with Autism. We were looking for any kind of cognitive improvements. He, along with everyone else, was still slightly baffled by R. While he made great eye contact and was very social in the sense that he seeks attention, the cognitive ability was clearly lacking. He was now well past two and still not talking at all. We had welcomed our second son, C, in the last month and still trying to get our footing in this new world of therapy. Our weeks were filled with home and office visits from therapists, going to school and caring for a newborn. When R’s school was less than thrilled to accommodate therapists coming there to see him, I knew I had to move him so we could maximize our time.
His new school was amazing. They welcomed any and all of our therapists to come and work with him either within his class or off on their own. They were extremely helpful and accommodating. R would have a therapist come to school every day and once a week we would make the 45 minute drive to see either Dr. Sutton or Dana. After school we had early steps and more therapists. I made it my full time job to see to it that he was getting everything that he could to reach his potential. Dr. Sutton at one point asked me how long I expected to keep up this pace. I didn’t know the answer to that, but at the time I almost felt like there was a deadline. I wanted to “mainstream” him by kindergarten so that was my goal. It was all going very well for a couple months until R’s behavior started going off the tracks. Every single time C would cry, R would loose it. When I say loose it I don’t mean your typical middle of the isle tantrum at Target. This was different. This was extreme and pretty soon he just started lunging at C. Now I was worried.
Life was starting to feel really hard and I wasn’t sure when, if ever, it was going to get better. If I wasn’t at home I was either driving in the car to a far away therapy appointment or researching something I could do to help R. When I was at home I had to have either a sitter or my husband with me because it got to the point that I couldn’t have my two kids in the same room or they would literally try to scratch each others eyes out and the screaming never, ever stopped. T, my husband, would sit in one room with one and I would sit in the other room with the other and we would switch. All day. Every day. For months. I remember calling a friend asking her “How long do you think a person can listed to screaming (either from the baby or from R being upset about something) before your brain chemistry or muscles start to die?”. I couldn’t go anywhere because I was busy with therapy and being at home frankly sucked. At one point a friend pointed out that I was like being around a live version of Flight of the Bumble Bee. The times I did get out I would end up way too intoxicated as a way of self medicating. This was going downhill fast. I was and had been seeing a therapist for a while about another situation and she was helping me deal with this too, but it was a lot to handle.
Our speech therapist Marci invited me to have dinner and drinks with a couple of her clients/friends. Of course I jumped at the chance to get out of the house. Like another mom whose children all have autism once said, “If Freddy Kreuger asked me over for a cup of coffee, I would have happily gone.”. I met two women that night that would completely change my life. On was Jamie, a spunky petite blond from Tennessee with an accent to match and that seemed to like saying the F word almost as much as I did. The other was Tina, a tall brunette whose perfect skin and lips you want to steal and a fellow foodie whose kids were almost the same age as mine. I couldn’t remember the last time I laughed that hard or felt that much of a normal human being. These women not only got me, I now knew what it meant when people referred to others as their tribe. Equally as important, Tina said her kids were acting the exact same as mine just two months ago and she tried ABA (Applied Behavioral Analysis) and it’s changed her life. I didn’t know what ABA was and I’m not sure I believed anyones situation could compare to the special kind of hell my house looked like behind closed doors, but she assured me it did and it worked. I would have tried anything at that point so I called to make an appointment the very next day.
ABA was like learning a new language immersion style. Think of everything you think you know about how to discipline a child and do the opposite. Ignore “junk” behavior, don’t tell them to stop their bad behavior, first then charts, acronyms like SEAT and data collecting. Lots of data collecting. They made it clear it would become worse before it got better. Are. You. Kidding. Me? What the *&^$ did I just sign up for? However, I was willing to try anything and you know what? Just like Tina had said, around two months in things started to change for the better.
Just as I felt like we were making headway with all the therapy, we made the decision to take R out of his private preschool and place him into our county’s full time early intervention program Child Find. This program starts at age three and goes until the child goes to kindergarten. They had a 66% success rate defined as children who enter the program then go on to be in a mainstream kindergarten class. We would still do therapy after school with our private therapists, but this would be a full time program that he would receive therapy all day as well (and not at our cost) and seemed like our best shot at getting him mainstreamed which was still my goal.
I think this is when my husband really started to begin his journey to go through his stages of grief. At the end of the day a diagnosis for your child of any kind is a loss of some sort. There had been so many people along the way tell us that R was unlike anyone they had seen and they were certain he would catch up. The fact that he is so social is what throws people off especially when you’re only around him for a few minutes, it can be hard to see. He was now in a class with all his peer having some kind of disability. Seeing your child walk with their class that really looks completely different than the rest of the classes is hard at first. It’s not what you had envisioned when your drop off and pick up your child. R would spend the spring session there and the following school year.
Spring of that second year I was really disappointed in the progress or lack thereof that he had made. I asked our pediatrician to run a genetic panel of tests to test for every single genetic abnormality there was to see if there was a chance this was more than Autism. The tests all came back negative. I finally felt like everyone agreed it was Autism (and nothing else) we were dealing with. I started looking to see what my other options were. I could apply for a different school with the same program or I could move him to a school specifically for Autism. It was a hard call, but I couldn’t in good faith leave him in the program another full year knowing he didn’t make much progress if any the previous year. I decided that if I had to move him every year to make progress then that’s what I would do. In my opinion, you’ve gotta make sure we are always moving in a forward direction.
So this is where we are now. R just turned five. He has Autism and goes to a school specifically for children with Autism. He gets along with his brother much better after almost two years of ABA therapy. We can all be in the same room now! Yay for miracles! We still do private therapy most days of the week after school. He has some great receptive language skills, we are still working on the expressive part. Most of our friends and family have been great, learning how to be supportive of our modern family. I’m not going to be one of those people that say Autism is a blessing. Autism is really hard and it’s not what we signed up for. It consumes your entire life. There are days (especially the ones that include the smearing of the poop-yes that happens) that I still don’t know how I’m going to do this forever, but those days are less frequent as the years go on. It does get better. I’m gonna say that again, IT DOES GET BETTER. It has brought me beautiful friendships and experiences I wouldn’t have otherwise had. It has taught me to keep the big things big and the small things small. It’s taught me that this journey is a marathon not a sprint and you have to take good care of yourself along the way. It has taught me to embrace change and uncertainty in ways I didn’t know I was capable of doing. Speaking of capable, it’s definitely made me realize I am capable of much more than I ever imagined.