It’s been a while, we were able to get in a quick getaway to Monterey for a few days last week, summer is winding down and we’ve been frantically preparing for the first day of school (T-6 days but who’s counting!?! Ok, this lady is!). Sporty is falling nicely into soccer season. She did a soccer camp two weeks ago and was asked to play on the competitive team for her age group but she (and we) decided to keep softball her competitive sport and soccer her “fun” sport (but we all know she’ll make it competitive). Yesterday she spent practice running and holding hands with one of her friends and I knew we made the right decision.
And then there is Young Jedi. I’ve mentioned that he’s been a tough kid a few times but I think people think we’re over exaggerating. His outbursts and fits have gotten out of control and when he’s really upset he tells us he wants to leave our family and go somewhere else, these aren’t the normal, “well I’m going to run away from home” threats. These are gut wrenching, pure full of despair crying episodes where he truly believes no one loves him no matter how long I sit and rub his back until he is calm and tell him I love him. I’ve expressed my concerns on his behavior since he was 2, he’s always been so extreme relative to peers. At 2 he nearly got kicked out of preschool for biting, we took him to a psychologist who said he had anxiety and a speech delay. We moved him to a smaller preschool and got him speech therapy and things got better for a year. He actually did really well in school, he was making friends, getting confident and showing interest in cooking. Then things started to spiral out of control again about a year and a half ago. He was having outbursts in school where he was telling the Director he hated her, he was kicking the filing cabinet, and just going into these rages. We pulled him last October when I left work and things just didn’t improve, I even got notes home from his part time preschool that he was too chatty during circle time and was getting aggressive on the playground. When I went to volunteer, kids in his class would tell me that Young Jedi was just a “big meanie.” It broke my heart. And it wasn’t isolated to school, we saw downward behavior at home as well. While I can’t deny any of these accusations about Young Jedi, I also know that he’s compassionate, generous, creative, he’s the first to rush to comfort a crying person and deep down past the Dark Side of the Force he has a tender and loving heart.
Finally in January his doctor agreed he should be seen. It took me 4 months to find a psychologist who would see a 5 year old and take our insurance. Seriously don’t get me started on the state of our medical system. I came across a behavioral health counselor through our insurance who seriously has been a lifesaver for me, she did all of the research, touches base with me monthly (now that we’re on a treatment track), and just makes me feel like the world isn’t out to make us fail. She is assigned to us so we always get her and she’s just such a great resource. Well one meeting with Young Jedi and an ADD/ADHD survey and the psychologist passed us over to a psychiatrist for ADD meds. I mean Young Jedi was the picture of ADD at the appointment, he was laying upside down on a chair, kicking his feet and imagine he had 1000 web browsers open in his head and he was just bouncing his conversation from Icees, to hating school, to Star Wars, to wanting a dog, and back to one subject and then to another. He was in rare form. We were and are hesitant to start right in with meds (though there are some days that I’ll take whatever relief I can get from our despair) and our pediatrician wanted a full evaluation on him before agreeing to the diagnosis and medicating a 5 year old. So I called the developmental pediatrician she referred us to the first week of May and got scheduled for November 7th!?! November 7th!?! 6 months out!!! I literally cried on the phone.
Then I learned Stanford has an 18 month waiting period. Then my dear friend (whom I owe immensely) spoke to her son’s Dr in late June and some emails with his assistant, tons of paperwork with a big glass of wine, and we miraculously got him scheduled for an August appointment, still a long way from June but hands down 100 times better than November 7th! Things were going from bad to worse so at the urging of my friend, I dropped the assistant a note asking if there were any cancellations, he called me less than 24 hours later (what, a Dr that responds!?!) and it turns out they had an opening 2 days later, did I want it. Um yes, do wild bears poop in the woods? So I put on my big girl pants and drove to the city with Young Jedi for an hour evaluation. Have you ever tried to drive in rush hour to the city with Young Jedi? It’s not for the faint of heart! Of course he had to pee as we were waiting for the metering lights crossing the Bay Bridge.
I can’t even tell you the amazingness of this Dr (let’s call him Dr Fix-It). First of all, he was on time. Second of all, we went into the exam room and he was on the floor and addressed Young Jedi before acknowledging me and started playing blocks with him and dinosaurs. Within 5 minutes, Young Jedi was agreeing to go off to the observation room with him and left me with the resident to fill out more questionnaires. They were gone the bulk of the appointment. Ok, it took 2 Legos to get Young Jedi to go see Dr Fluffy Unicorn after he broke his leg to get a cast put on said broken leg and he has literally known Dr Fluffy Unicorn his entire life. But Dr Fix-It, he just runs off with within 5 minutes. That’s serious skills!
Friday Hubs and I went without kids to meet with Dr. Fix-It and on Friday Young Jedi was diagnosed with ADHD and Inflexibility Temperament, cause apparently there’s a medical term for being a giant stubborn pain in the arse.
Our heads are spinning. There’s a lot of work to be done but the last two times we’ve left Dr Fix-It, I feel like there is a light. We’ve got some therapies, we’ve started DHA/Omega-3s (ever try giving a kid who can tell the different brands of milk, fish oil???) and I’m taking out all food dyes and trying to slowly wean out preservatives. It’s very daunting. Meanwhile we’re just trying to manage his temperament while we do our research (The Explosive Child, Mindset, are our super fun summer reads!). Oh and Dr Fix-It is making me drop Young Jedi’s naps, I’m heartbroken.
It’s been a tough weekend. I’m mourning the acknowledgment of the struggles Young Jedi faces. I really wanted to have the Dr tell us that he was tough, but that he was within the normal boundaries of a 5 year old boy. You know, the “Oh he’s just a boy!” excuse, I could almost will it out of him. With Sporty, we were diagnosed in utero. I had 16 weeks to accept, research, and plan for treatment. With Young Jedi in a matter of minutes, it’s this is what we’re dealing with, here are starting treatments and you need to educate yourself on the diagnosis, all while trying to implement strategies while learning them. I feel like I’m messing it all up! I don’t want any of this for him or us and I fear there may be more diagnoses as he spends more time with Young Jedi. The Dr made a comment that he could tell that once you get to know Young Jedi, he’s the type of kid that you have to walk on egg shells around. It is so dead spot on, we fear the wrong move or comment (Sporty is the queen of coming up with these igniters) that can send Young Jedi into a downward spiral that becomes a 2 hour meltdown, or as Dr Fix-It calls it, Defcon 5. I worry about him starting school and getting off on the wrong foot next week. Like beyond stressed about kindergarten starting.
I’ve thought about keeping his diagnosis private, but then I’d feel like I’m embarrassed by him. Yes, sometimes (ok frequently) I’m embarrassed by his behavior but I’d never be embarrassed by my son. I’m more scared of the battles he’ll have socially, emotionally, and academically. I haven’t seen him smile or be carefree in a really long time. I just want my happy, carefree boy back. I want to know he’ll come back. I got a glimpse of him yesterday and it was amazing, he was laughing his big belly laugh and acting silly and fun but today he is gone again and I’m sad about that. I’m trying desperately to get that belly laugh back. I’ll do whatever it takes to get his belly laugh back.