My Quirky Kid- Part 1

*While by definition Will is a “special needs” child, I feel somewhat like an imposter. I’m very aware that on the scale of special needs Will’s struggles are incredibly mild, but I have realized that while under different circumstances, the emotional patterns of parents with special needs children are the same. Writing the series, “My Quirky Kid” is indented to bring to light the emotions I face as my family goes through diagnosis and therapy of our special needs child, the same emotions many other parents face. Every parent and special needs child deserves a voice. This is mine.

Maybe I should begin with the first time we saw Will. Twenty pounds lighter than pre-pregnancy weight, I feebly made it up on the exam table for the doctor to do the first ultrasound at 10 weeks. We looked up at the monitor speechless. It wasn’t his jellybean shaped body that amazed me, or his little twig-like arms—it was his heartbeat. His heart seemed so huge for such a small jellybean, and it was beating so strongly, and at lightning speed. That was our first introduction to Will. Little did I know how much my amazement of that rapidly beating heart would be an archetype for our lives together.

Will has always been a 100% kid. When he’s happy, he’s happy with 100% of his body, and conversely when he’s sad or angry, he uses 100% of his body to express it. His hand-eye coordination and overall agility was remarkable, right out of the gate. He rolled over at three months, started holding pencils correctly at 12 mos, and as a three year-old, I’ve had multiple people suggest that he’d make a great engineer because he can figure out how to open/climb on top of anything.

I’ll never forget at his sixth month check up, when we were concerned that his weight percentage had fallen and my husband asked the pediatrician if this is anything we should be concerned about. She explained that usually around this age, kids start becoming very mobile and by extension, lose weight because of all the exercise they do each day. Simultaneously, Will is rapidly circling his arms in big circles and flapping them up and down, perfectly exemplifying the doctor’s point. He’s just always been on the go. He never did anything slowly or gently. Everything was at lightning speed—just like his heart.

He played hard and slept hard. I always joked to my friends that I could keep up with Will (then, 14 mos) because he always gave me twelve hours at night, and two naps a day to recuperate. And while he was very active, he was a sweetheart, always hugging and kissing all of his friends and with his jumbled speech asking, “Ok? Ok?” when someone fell down. Will’s heart was pure and he was so loving and happy. He said his first word at fourteen months, and while we knew that was late, it never concerned us because he was so expressive in other ways and could easily get his point across.

This pattern continued over the next two years. Sleep hard. Play hard. Talk a little. He was always at the bottom of speaking skills for his age, but was still always in the “normal” range. But even our pediatrician agreed it was nothing to worry about, because it was so obvious that he was developing so quickly in physical talents that it wasn’t like he wasn’t progressing at all—he could out pitch any eight year-old at three and a half. And just when we would start getting concerned, he would turn a corner and we’d think, “oh, he’s fine!”

When he started preschool in the summer of 2011 and we saw speech improvements right away. We were so lucky to get him into a peer model program through our school district, which means the class was a mixture of special needs students and more “average” developing kids, like Will. The benefit of this class (besides that it was the cheapest preschool option around), was that it had a lot of resources for the special needs students that Will could participate in. Like having a speech therapist in the classroom once a week, and with a teacher trained in Special Education, we felt confident that if we should be concerned about Will’s speech, she would let us know. We were overjoyed by the progress Will made in school, but as his classmates improved also, the gap between Will’s speech level and his classmates was still the same.

Then October of 2011 came and completely out of the blue, we were offered a new opportunity in Washington, D.C. and we would be moving to Virginia the next month. We had a parent-teacher conference with Miss Lisa to talk about where Will was at academically so we would know where to begin when we got to Virginia. We sat down and she immediately glowed about Will being so funny and sweet, and how well-liked he was by his peers. And then she said, “But as his teacher, I would recommend that you test him for speech delays.” We weren’t shocked in any way, and in fact, I think we were relieved. And then she said, “I think there’s something going on where he doesn’t understand certain verbal instructions, or some kind of processing issue.” This was a new concept for us, but when she explained that she always had to get down on Will’s level and give him specific instructions, because verbal instructions given to the class seemed to be lost on him, we recognized that we had to do the same things for him at home and this idea made sense. I went home and immediately called Fairfax County School District to schedule testing for Will, but because of the holidays approaching the soonest they could schedule us was January 10, 2012, as the start of a two-month assessment.

The next few weeks were a complete whirlwind and everyone felt the effects of picking up and moving in such a short amount of time. Everyone was physically, mentally, and emotionally exhausted so when Will started having massive tantrums that week, we easily attributed them to all the stress of moving.

But they didn’t stop.

These tantrums were a force to be reckoned with. It was like someone and taken my son and replaced him with the Exorcist. At the drop of a hat, our sweet Will would become belligerent with animal-like instincts of rage and violence. These started happening multiple times a day and it felt like walking through a minefield. You just never knew when he was going to go off.

Instantly he would take whatever he could find and throw it at my head as hard as he could. If I wasn’t around, they were thrown at the wall. In our efforts to calm/restrain/punish him we were constantly hit, kicked, bitten, and spit upon with incredible strength for a three year-old. The only thing we could do to calm him down was to strap him in Duke’s carseat in the car and leave him there for ten minutes until he calmed down. But even harsh discipline tactics like this didn’t change his behavior in the slightest—it was just a temporary bandaid—and these tantrums continued almost like clock-work multiple times a day. Will became irrational and general protocol that he never had a problem following in the past, became impossible. Like running away from me in a store, not holding my hand in the parking lot, and other normal things seemed to be like trying to force him to drink molten lava. There seemed to be too many things awry in Will’s behavior for this to just be a problem adjusting.

I tried new tactics of putting all my focus on Will each day and letting him choose what we did, hoping this would give him a sense of power and in-turn, less blow ups. Other days, I scheduled out every minute with activities in hopes of keeping Will busy enough that he had no time to be bored and have a tantrum.

But to no avail.

A dear friend, (social worker/pediatric therapist) recommend some other ideas to try, like restraining him in a loving way to help calm him, but that only led to him vomiting multiple times from the terror of his mom sitting on top of him to prevent him from wreaking more havoc. The tantrums continued with a vengeance and my other son, Duke, was completely neglected. I had never been more exhausted and beaten down in my entire life.

Nothing was working.

I was so incredibly exhausted every day and I craved sleep for two reasons: my body sincerely needed it, and sleeping was the only true way I could escape how insanely hard this situation was—for all of us.

My world came crashing down one afternoon when I pulled into our drive way and opened up the door for Will to get out and he sprinted two blocks away from me, completely out of my sight. I had Duke on my hip and there was no way I could catch him carrying Duke, but I couldn’t leave Duke both because there is no fence in our yard and we live on a busy street. I was outraged, frustrated, heart-broken and I didn’t know what to do.

So I cried. Sobbed, actually. Right there in the front yard, while my son ran away from home and I held my other son on my weary hip.

And it was then that I conceded that this was a problem bigger than I could handle by myself. This was much more than a speaking delay. Especially when he did the exact same thing the next day.

I was completely distraught and I was overcome with sadness and guilt. What happened to my son? He felt completely unreachable and I felt like I couldn’t even reason with him in anyway. But as his mother, there was a whole deeper layer of guilt. Was he acting this way because of my faults as his mother? Was it my fault that I didn’t know what he needed to feel better? I knew Will better than anyone, but even then, I was at a complete loss with how to help him. I carried him for nine months, and have raised him and loved him every single day for almost four years—shouldn’t I be able to calm him down when he’s upset or be able to parent him in a loving way to prevent such violent behavior? I felt like a complete failure, and as a caregiver, I was completely drowning. At my lowest point, I sobbed in my husband’s arms that I wanted “the old Will” back. The month after moving to Virginia was dotted with bouts of my crying (daily), and every night talking with my husband about what we were going to do. All we could do was hold out hope that January 10th would give us an answer.

I took the boys to the library and as I was passing a table at the door, I saw a book called "The Elephant in the Playroom: Ordinary Parent’s Stories of the Highs and Lows of their Special Needs Children". I started reading it that night and was overcome with other parent’s stories of their children diagnosed with Autism, ADD/ADHD, Aspergers, Sensory Integration Disorder, Bi-Polar, Speech Delays, and Schizophrenia. While our experiences were very different, our emotions—as parents— were exactly the same. One mother talked about her son’s speech delay and they knew something was wrong when they realized their son only understood nouns, and was eventually diagnosed with Auditory Processing Disorder (APD), meaning that what he hears is different than what his brain interprets. His behavior seemed similar to Will’s and I thought about if Will could have APD. I knew Will understood more than nouns. He understood verbs well, too. But the more I thought about it, the more I realized that Will didn’t speak or understand anything except nouns and verbs. No prepositions, pronouns, or other filler words.

The realization floored me. This was why when I’d tell him to go look for his lost toy behind the couch, he’d walk over to the couch and look confused when he got there. This was why I always had to get down and look him in the eye when I gave him a verbal instruction, one simple instruction at a time. This was why when he was in a group and a verbal direction was given, he was the last kid to do the task because he had to wait to see the other kids do it first to be able to understand what to do.

I called my friend (the lovely therapist, noted above) and told her some of the things I had noticed in his behavior with regards to speech and I said, “it’s like he just doesn’t understand what most words actually mean,” and she confirmed that she thought he had a problem processing information he heard. I asked her what kind of therapy is given to kids with processing issues and she explained that while diagnosis is different, therapies can be really similar to children with autism, using speech and occupational therapy. I also did more research matching more symptoms from Will’s behavior to those of APD. But I also learned that an APD diagnosis is lengthy and can only be given by an audiologist. But the biggest problem was the test for ADP isn’t done until age seven, due to the complexity of the assessment.

We talked for a long time and I expressed my fear of going into Will’s assessment next week and the powers at be from the school district won’t give him the help I really feel he needs and she said, “Amy, you don’t have all the answers as the parent, but you’re the best advocate for Will and you’re going to break down the door if you have to for Will to get the help he needs.” I could feel the hairs on the back of my neck stand up as she said this and I knew she was right. I was Will’s advocate. I didn’t know the answers, but I knew what I needed to do to get the answers. This is my job as his mother—to to stand up and speak for him when he can’t on his own. To be the voice of his pacing heart, when he didn’t understand and when the words wouldn’t come out.

We felt impressed to ask our family and close friends to hold a special fast for Will that next Sunday. All of his actions screamed, “I’m not ok, Mom. I’m really not ok right now, Mom. I need help.” He needed help, and so did we. I haven’t been very vocal about this struggle, mostly because I haven’t had time to vent to my friends about it because I had my hands full helping Will as much as possible. But even with a very vague description that Will was having a hard time adjusting to our new life in Virginia, I had a few dear family members and friends comment about how close they felt to us as they fasted for Will. We knew (and have always known) this was a really special kid.

The next Wednesday, Will started preschool again and it was like a switch went off inside him. He was the “old Will,” loving, kind, and so very happy. It was amazing. Of course, his speech was still the same, but his behavior had done a 180 and we know that was an answer to our prayers and fasting. Tackling Will’s special needs are so much more conceivable when I’m not constantly worried about Will’s blow-ups.

So today is the big day. January 10th. Today starts the diagnosis, and hopefully, therapy process.

Let’s go.