Yesterday was Autism Awareness Day and the following post is a bit of a departure from my usual writings. I wanted to share with you the struggles we've had in raising a bright, loving, wonderful child with special needs.
"I can't do this anymore!" I screamed, as I threw the breast pump flange at the door where my husband was standing. I was exhausted, stressed, terrified and sick of pumping and trying to feed my son every two hours around the clock. I had been crying every day for the previous two weeks, hormones raging post-partum and generally out-of-control. The shock of going into labor 4 weeks early, coupled with non-stop doctor visits, consults with lactation specialists and the fear and disappointment of being told that I wouldn't be able to breastfeed my son was taking its toll.
My son was born premature and that defined every moment of our lives for months afterwards. His start to life was a rough one filled with tube feeding, light therapy and some serious swaddling to keep the sensory input low. We knew fairly early on that he had some problems dealing with his environment as he never let us put him down and he would never let a caregiver out of his sight or he would scream mercilessly until the offending person returned.
I had wanted to follow attachment parenting with him and, fortunately, many of the techniques seemed to suit him perfectly. We coslept until he was 17 months old (when my daughter was born). We carried him around in a sling, whether we wanted to or not. He would only sleep during the day in the sling and refused to be put down. I breastfed him for a year and, even though I returned to work during the day part-time, he refused to take a bottle. Ever. He would rather hold out until I got home and end up nursing all night long to make up for it.
We thought these were just sensory issues from being premature or bad habits we couldn't break him from, but the look of suspicion he constantly had on his face as he peered out of the sling showed to us that he had a highly sensitive and anxious personality. Traits we hoped he would outgrow as he matured. Yet when he was old enough to interact with other children, he would avoid them, clearly afraid of their noise, in-your-face movements and unpredictable actions. He didn't know how to interact with them and he much preferred adults that were more easy-going and predictable.
At parties, he always clung on to us, afraid to move out of his comfort zone, preferring to watch from the sidelines rather than participate. It was just too much for him. I searched endlessly for explanations of his behavior, not really ever getting anywhere concrete. He didn't appear to have autism since he didn't exhibit some of the more classic traits - he made eye contact and was extremely verbal.
In fact, he had a tremendously large vocabulary by age two, high comprehension and advanced verbal skills. His motor skills, on the other hand, were quite lacking. He could sit up at the normal age range, but he never crawled, he went straight from sitting to standing/walking at 12 months. Since he was always so intently studying whatever he was playing with, it was if he didn't need to bother with moving about. Many people commented on his abilities of concentration and interest in something for long periods of time.
His anxiety and discomfort with the world around him became more apparent as we took him on outings and he became terrified of anything large that moved, was noisy or was unpredictable. We quickly learned that going places like the zoo, science museums, and really any large venue was so uncomfortable for him that they became off-limits and we stuck to the sanctuary and safety of the house. It was just too exhausting to do otherwise. He was miserable on these outings and we, in turn, were frustrated and disappointed with these attempts.
We muddled along like this for years, avoiding sending him to preschool for fear that the school environment would be too much for him to bear, and helping him learn to interact with his younger sister, of whom he had much animosity and jealousy. He was able to remember in amazing detail events that had happened years before, showing an ability to recall information that most kids that age lack. He was also extremely adept at perceiving other's emotions and excessively sensitive to those who exhibited sadness or fear, yet unable to identify those same emotions in himself.
When we did finally send him to Montessori preschool with his sister when he was 4/5 (we figured he would do better with her there with him), his difficult behaviors became even more apparent. Initially, he had major separation anxiety and issues participating in group activities like circle time. It was too overwhelming for him. He clearly wanted to befriend some of the boys his age, but he just didn't know how and his lack of ability at expressing himself emotionally and communicating with others made him frustrated and act out. This generally resulted in him hitting or biting. Oftentimes these behaviors erupted out of the blue simply because he got so overstimulated.
I lived in fear every day of the preschool calling for us to pick him up, or reporting that he hit another child, or bit someone or caused some other panic. Another issue was his potty talk, particularly when he became anxious. I dreaded the day I would get a call that he would be kicked out of preschool, but fortunately, that call never came. The school was willing to help intervene and see if there were accommodations they could make for him. They recommended having a public health nurse come and observe him in the classroom and make some suggestions, which ended up being somewhat helpful but they certainly didn't make many of the problems go away.
By this time, I was suspecting that something more than just anxiety was going on. His disinterest in kids and inability to interact with them were clearly flags. The nurse had recommended getting OT to deal with the sensory issues he was having and we got on the 6 month waiting list for that to begin. In the meantime, I arranged to have him seen by a pediatric neurologist for assessment. Given all the behavioral traits he was exhibiting I was fairly sure he had Aspergers, or high functioning autism.
It was another long wait to see the neurologist and we didn't get an appointment until the third week of Kindergarten. By then, he was already experiencing severe and debilitating behavioral and emotional issues with the transition to school. He was eventually diagnosed with a tic disorder, OCD, ADHD, anxiety and sensory disorder and was started on a medication to help with them. Again, the new school worked to help him and he made great improvements such that during his SIT meeting (Student Intervention Team), there was no recommendation for an IEP (Individual Education Plan) since he was doing so much better. The school year ticked on and, even though he still was having major social issues with the other students, he was managing okay. Behaviorally, at home, he was still extremely challenging and homework was an intense struggle.
Towards the end of his Kindergarten year, he started having more problems, this time with the OCD. He had experienced a few occasions where he had gagged on some food, the first time it was asparagus and the second on a tomato skin. He became obsessively worried that he would choke, to the point where he started refusing to eat or drink, fearing swallowing. He started losing weight and, even though I hoped this phase would pass, it was getting worse. We consulted with his doctor and eventually started having him see a psychologist to deal with the OCD and anxiety, doing cognitive behavior therapy as a treatment.
This last year, first grade has been both a lot better and a lot worse. He still has issues with hitting when frustrated or unable to express his desires. His anxiety was less at the beginning of the year but then he had a relapse with the OCD and eating, this time triggered by a bout of stomach flu and vomiting. He refused to eat and drink yet again and dropped weight quickly. When he finally started back to school again after winter break, his anxiety was extremely high and behaviorally, he was having more issues with his OCD becoming completely debilitating. It was absolutely miserable to watch.
We went back to the neurologist and he was started on another medication, this time for the OCD. No parent wants to medicate their child, but then again, no parent wants to watch their child waste away in front of them either, living in fear that you will have to admit your child because they are unable to cope with the world. The side-effects with SSRIs are always a little bit of a tradeoff, particularly as the patient is adjusting to the new medication.
"He seems much more relaxed and content at school and came back this week flawlessly." We initially were getting good reports from his teacher yet we struggled with the decision to keep him on the new medication because, while his anxiety is considerably lower and he's choosing to eat more food and a broader variety of food, the side effects are an increase in aggression and impulsivity and he's had more problems with getting in trouble at school for hitting.
A few months ago his teacher recommended another SIT meeting, this time because it has been difficult to assess what he is learning since he oftentimes refuses to participate in reading and is so rigid in his thinking that his writing exercises are unusual. This isn't surprising since he has obsessive thinking about whatever his current interest is, whether it be Legos, Egyptology or the like. All writing exercises end up being a variation on his fixation. At the SIT meeting we decided to pursue an IEP, to make sure that he would get access to whatever services would be helpful for him to succeed at school, most likely many of them being behaviorally based. He was already getting reading tutoring and doing a social skills club to learn how to interact and, basically, be a friend, but with a formal plan, those services would be enhanced, documented and carried with him from grade to grade.
We just recently finished the assessment process, with recommendations that he be tested for Aspergers, which comes as no surprise to me. The neurologist didn't think he had Aspergers, but he never did the formal, hours long testing. They also suggested having him tested for the advanced learning program, since he tested high in some subject areas and extremely high in spatial reasoning (98%). Must be all those Legos.
He still has coping issues with school as we try to find the right balance of medications and we've been dealing with the aggression issues as much as possible. Add to it the confrontations from parents of students who he is hitting and their thinly veiled threats don't exactly help the situation much. Between struggles at home and struggles at school, having a child with special needs is very emotionally and physically draining.
On the flip side, in spite of all our worries, our son is a tremendous joy, bringing an amazing intelligence, humor and perception into our lives. His intense interest and excitement is unmatched in most kids his age and, when he is in his element, he is unstoppable. His enthusiasm is contagious and his capacity for affection is enormous. I do worry for him and his future, as most parents do, but we can only do the best we can by him and advocate for him to make sure that he is as successful as he can be. He may not be considered "neurotypical", his brain wired a little differently, but then again, that is true for many of the greatest minds in history.
And, I hope that with patience, understanding and acceptance by students, parents and strangers, kids who struggle to operate in an oftentimes foreign world can achieve the great things they are meant to without being held back by ignorance or discrimination. So, on this day after Autism Awareness Day, I hope that the next time you or someone else sees a child acting up or acting differently, that you give both them and their parents the gift of understanding.