Knowing is half the Battle

J&N's first day at Leaps and Bounds

I can't even begin to describe how incredibly excited I was for September. School was beginning and with it I would be acquiring 3 kid free hours, three days a week. 3 FREE HOURS! Soooo...I had failed to calculate the commute time and all of the parent volunteer hours so my exciting 3 hours soon whittled down to 1. 1 GLORIOUS KID FREE HOUR! I will take that hour and do marvelous things with it like grocery shop, or take in the dry cleaning without 3 screaming children. Pure bliss.

Nolan's first day at AMP

The school year began and we all got into our groove. Nolan was following in his parent's footsteps and going to the local catholic preschool. A magical place, filled with love and warmth, called American Martyrs Preschool. The moment I met the director, Miss Jeanie, no other preschool stood a chance. She reminded me so much of my dear Yayita and of my sister in law's mom, Lois. A very wise, no nonsense kind of woman with a gentle soul. I knew instantly that this place was perfect for Nolan.

Jack during OT at Leaps! 

Jack was still a bit delayed so we decided to enroll him and Neva (they took her as a peer model) into an early intervention program called Leaps and Bounds.  This is where my beef with Harbor Regional Center and the "system" starts because had it not been for my friend Sara randomly contacting me via Facebook and telling me about this school, I would have never heard about it. It was the perfect place for Jack. They offered all of the therapies he needed and conducted them in a traditional preschool setting. I wouldn't have to spend every spare minute schlepping him from occupational therapy to speech and then to physical therapy, day in and day out. It was basically like an all inclusive resort. Well, no not really, but kind of. Why on earth would Harbor Regional not tell me about this place? Thank God for Sara.

Right after Jack had the tubes put into his ears we made the rounds with all sorts of different doctors and therapists. Ophthalmologists, Physiologists, Neurologists, Oh my. All came to the same conclusion; Jack had benign congenital hypotonia. Congenital hypotonia is basically just low tone that everyone believed he would out grow. The neurologist was even kind enough to give us a timeline. According to her, he would catch up to his peers no later then his fifth birthday.  Every 3 months we would go back to the neurologist, she would take 2 minutes to look at him and tell us that he looked great. No further test, no further questions. Another 3 months would pass and we would hear the same. Frankly, it was music to my ears. What mother doesn't want to hear a brain specialist say that their son is total fine, just a little delayed? And knowing that in five years or less he would catch up made this teeny tiny pill so much easier to swallow. This went on for a year. In January of 2014 I stopped believing her.

Shuffle Board was played
at the party!

She got me to smile!

On January 18, 2014 we drove up to Thousand Oaks, CA to celebrate my wonderful brother in law Chris' 40th birthday. The place was packed with familiar faces. Friends and family had come from all over to celebrate Chris. I am not sure if it was the amount of people, the noise or what. But the moment we set foot in the restaurant a flip switched in Jack. He immediately started thrashing, screaming, crying, and clawing at me. He needed to get out, get away, I could see it in his eyes. But where? What do I do? Is he just hungry? Is he sleepy? Does he have an ear infection? (all the moms out there know about running the laundry list of "could it be's" when the kids act out). We gave him some food and he stopped for a bit while he stuffed his face with mozzarella sticks, but almost immediately started up again. Wreathing his body so I could barely keep a hold on him. I could feel the sweat dripping down my back…why the hell did I decide to wear a sweater? I took him outside to the patio and he was able to calm down a little bit. Outside he still seemed a little anxious, but at least we were out of the public eye. I was devastated and frankly a bit humiliated.  I know that I should not have felt that way but I was so proud of having such well behaved kids. So stupid, I know but I was embarrassed. He was making such a scene, this wasn't my Jack. Was he having a panic attack? Do toddlers have panic attacks? I was a pro at dealing with toddler tantrums, but this was a whole other beast. I tried to do whatever I could to distract him. I tried singing, playing with rocks, leaves, whatever I could find. After nearly 2 hours of this we threw in the towel. The kids fell asleep on the car ride home and all was back to normal in the morning. Maybe it was just a one time thing.

The next Friday I loaded up all the kids in the car and headed over to my friend Susan's house for our weekly play date. This play date is often the sole reason I make it through the week alive!  I don't care if I have to wake 3 sleeping babies to get there, we never miss it! These 9 women (and our 19 kids) are my family in a place where I have none. We can count on each other, we vent to each other and most importantly we laugh with each other. Because there really is no better way to go through this crazy motherhood thing then with humor.
Okay so anyway, Susan's house was obviously a place that the kids were very familiar with. But for some reason the moment we walked through her door, that same switch that we had seen the weekend before flipped on in Jack. He immediately started to throw himself on the floor, then pick himself up and run right into me hitting, screaming, biting. I didn't know what to do. I asked Nolan and Neva if we could just go, but they were having so much fun. I felt so guilty taking them away from their friends when we had just arrived. I thought that maybe he would warm up to the situation so I waited. I tried to feed him, soothe him…nothing worked. My heart was literally going to pound right out of my chest. I'm not sure if it was because of the humiliation or the anxiety of not knowing what was wrong with my child. I took him into Susan's room and sat in one of her daughter's over sized pottery barn chairs and rocked him with all my might. His little body responded well to the pressure and he calmed. My body went numb and I felt this overwhelming wave of hopelessness come over me. Tears were streaming down my face as I held my son tight, rocking him as hard as I could. I knew then. Something was definitely not right.

The following Monday I called all of his doctors and told every one of his therapists what had happened. I needed answers. Why was this happening? Jack is such a social little guy. He connects so well with people (when he isn't having a panic attack or whatever this was). I knew in my gut that he wasn't autistic. All of his doctors and therapist agreed. Jack was not autistic.
So what then? What on earth could this be?

My Happy Jack