Continued from Part One…
At pre-school drop off and pick-up, I had gotten used to the looks from the other mothers. When I came around they either whispered their plans for play dates or stopped talking all together. Like I really wanted to take Drew to “Jump Zone” anyway. A gigantic room full of inflatable moon bounces would be like torture and holds the potential for accidental death and/or dismemberment of several children. At the very least there would be a couple of concussions. (Again- how young is too young for a police line-up?) No, I had my own very understanding friends with children who loved to play with Drew and welcomed him with open arms and copious hugs despite the need for pads and helmets. Drew made it easy to see who had the intestinal fortitude to stick around. He had a way of zeroing in on the “weakest” of the herd and dispensing with them quickly. What we were left with is a strong group of kids and adults who love us completely and totally and to whom we never have to apologize. (We still do because that’s the way we are, but we are always ignored or told we’re being ridiculous.) They are our life-raft.
So no, the self-righteous moms with “perfect” kids didn’t bother me. What came like a sucker punch from Mike Tyson was a phone call I received from the director of the pre-school. I had enrolled Drew in the half-day kindergarten program there for the coming fall. Drew was going to turn 5 and I knew he wasn’t ready for public school yet. Apparently the pre-school wasn’t ready for year number three with Drew. “We love Drew and would be happy to have him back… but, I’m just wondering if maybe there isn’t some place better suited for him.” Well holy shit. I had always joked about him getting kicked out of school before he turned 5 but now it was actually happening! Besides that, where were we supposed to go? Name a book about special needs children and I’m sure I’ve bought it. Name a forum on the internet that deals with behavior issues and I’ve probably joined it. Name an article about mental disabilities in children and I’ve read (or at least skimmed) it. They all make you realize that you’re not alone, that you’ve got it easier than a lot of people and that we should always count our blessings, but none of them describe your situation exactly or provide any concrete help.
Even the agencies in your area that are supposed to be “in the know” aren’t always helpful. We had the “transition” meeting with our IEP team to discuss kindergarten plans for Drew. We had him re-evaluated because I was hoping he’d at least qualify for speech this time and/or some individualized learning during his day. He didn’t. The plan they handed us included just this: a 15 minute resource consult with his teacher once a week. That meant the two teachers would get together, his classroom teacher would vent about how he was driving her nuts and the special ed. teacher would try to give her tips on how to handle him. Not even in the ball park of good enough. When we expressed our disappointment and told the team we were looking into half-day kindergartens at non-traditional schools they were appalled. “We rarely hold kids back for behavior issues.” we were told- as if our only concern was how it would look to the neighbors if Drew didn’t pass kindergarten. How in the world was he supposed to learn the material if he couldn’t even understand that pretending you’re a lion, growling your ABC’s and hugging everyone you see during the day because you’re trying to escape the hunters are not appropriate behaviors?
We were at a crossroads. Where do we go from here? I knew someone with a son Drew’s age with his exact issues. She had chosen to put him on Prozac in order to attend public school. That wasn’t a decision I was comfortable with for Drew. I know medication is necessary and a means of survival in some instances, but for us, it had to be a last and final resort and we weren’t there yet. Thank God nobody had recommended that for him. Besides that, it would be hard to support HIS drug habit when such a large portion of our income already went towards keeping me supplied with wine. I’m not judging anybody else because having a special needs child is difficult. People don’t understand your child or how you have to parent them. You’re like an outsider looking in at other families who can go to the playground and teach Johnny manners and the proper etiquette of playing with others while you have the Tazmanian devil out without a leash. Just the thought of a playground ties my stomach in knots to this day.
I had never been able to find a name for the symptoms of Drew’s “disability”- other than “strong-willed”, which the term itself is laughable. I’m not a fan of labels per se, but having one might have gone a long way in being able to explain his actions to others. Of course I would never wish anything bad for my children but there were times when I thought life would be a bit easier if he had some sort of “tell”- a birth mark or some other sign so that people could look at him and understand that he’s not a bad boy, he’s just wired differently. Instead (and thankfully) he’s an amazingly handsome boy with huge expressive hazel eyes, a bright smile and cleft chin just like my dad’s and my grandfather’s before him. He’s also incredibly charming when he wants to be. A smooth talker full of compliments who knows how to get what he’s after. It’s saved his ass on more than one occasion. “Junior Senator” is a perfect nickname for him- he has never met a stranger and leaves miles of smiles in his wake wherever we go.
So, with his strengths and challenges in mind, I began searching for a “suitable” place for Drew. I came across a website for a private school about 30 minutes away. A page on the website was entitled “Who Do We Help?”. It couldn’t have described Drew better if it had used his name, address and last school photo. The children they help was Drew to a “t”. After I finished sobbing from relief, I printed out several pages to show Arnie that night and called the school to make an appointment for Drew. Our first visit to what I’ll call “The LD Center” was kind of a preliminary screening to make sure the fit was correct. I was ecstatic to find out they don’t have one-way mirrors at their school. They do have lots of psychotherapists and very, very smart people. That’s almost as intimidating. Drew met with the director of the program who didn’t evaluate him with a standardized test, he simply talked with Drew as he played with a bouncy ball. I was worried for the good doctor’s safety. He was a tall, thin, older gentleman and I was sure Drew could break him in two without blinking an eye. I also thought the choice of bouncy ball as a toy was awfully brave. Clearly this man didn’t value his life or his eyesight! What happened instead set me up for my well deserved reputation as “the crying one”. I’m surprised that in addition to that, my love of laughter, and the ability to swing between the two quicker than you can snap your fingers didn’t earn me the title of “the one who needs Valium intravenously STAT!”. I would have proudly worn that on a sash. No, instead of frustrated sighs and defeated looks into the mirror by the evaluator, I saw my son truly bonding with this man who was honestly enjoying his interaction with Drew and several times laughed heartily and sincerely at Drew’s antics. I felt some of the tension I had been holding in my body for the past two years leave me. There WAS a place that was better suited for Drew and just maybe we’d found people who could understand him and help all of us.
Dr. Director agreed with me. “Drew is our kind of kid” he declared. Thank goodness! Although, he would have had to have been blind, deaf , dumb and wrapped in a mattress to not see that. Next came the meeting where we found out more about the school and they find out more about us. I was given a 14 page questionnaire which was more in-depth than any county questionnaire we had ever filled out and also included a financial worksheet. This was our first clue that this experience would be life-changing in more than one way. At our meeting, the doctor told us that Drew has what is referred to as Pervasive Developmental Disorder- Not Otherwise Specified. Basically what that means is that he has some symptoms of several of the autism spectrum disorders. He’s not autistic and he doesn’t have Asperger’s syndrome, but instead has a bit of this and a bit of that. Mostly, communication problems and social and emotional delays. I looked down at the piece of paper where I had just written “PDD-NOS”. I wanted so badly to scratch it out and write in big letters “DREW” instead. I knew what THOSE letters spelled and what “Drew” means. It means joy and love and laughter and highs and yes, lows. “PDD-NOS” just looked foreign. The doctor saw that I had written down his diagnosis and, as if he had read my mind, told me “You might as well throw the paper out. Those are just letters. I only told you that so you could have an answer. It’s not important.”. Then he handed me the tissue box. He also laid out the school’s philosophy and went through what we could expect which was a lot of hard work for Drew as well as us. It sounded promising and scary at the same time but we were so thankful to have a plan for the next two years (the school only goes through age 7) and someone in our corner who was optimistic and understanding.
And then he hit us with the bill. After Arnie and I started breathing again he assured us that they have financial assistance according to need. Some people get squirmy when you talk money and it makes them uncomfortable, so let me just say this- one year at LD is equal to a year at Duke University. Look it up. Or don’t… it’s $36,000. My thoughts went in this order: 1. There’s no way we can afford that 2. We could if I started working again 3. As a prostitute 4.I don’t care, we’ll do whatever it takes. 5. I’m gonna need shorter skirts. It was at this point that I understood that scene in Forrest Gump better than ever. (You know, the one where he’s sitting on the front porch of his house while his mama “entertained” his teacher inside.). Hey, you do what you’ve gotta do for your kids, right?! Dr. Director saw our distress and assured us that it would be okay, no family had ever been turned down because of money. They have an amazing fund-raising goddess and the community is very good to the school. Thank God for the generosity of others… and credit cards.
Drew began at LD the month after his 5th birthday. It’s an 11 month program, 5 half-days a week. There were 7 children in the class with two teachers, both of whom had multiple degrees (one a master’s) in special education and psychology. After a very lengthy and complicated phase-in process it became clear to me that this was unlike any school I had ever seen. Every child had different issues and when put into a room together, it was chaos every day. One of the other mothers and I sat in our designated spot during phase-in and literally all we could say was “What the f*ck?” over and over and over. I wondered what we had done, if this really WAS the right place for Drew and if he was going to be able to survive. Thankfully the LD philosophy is to treat the entire family not just the child so part of the tuition included weekly meetings with a therapist for Arnie and I.
I will preface this by saying I have never been to a therapist. Some of my friends have and they’ve been helped greatly so I was trying to have an open mind. Even though a part of me wanted to wear a hat made of tin foil to our first appointment so she couldn’t control my mind. We soon found out that even though we talked about things going on at home, it wasn’t about us. It was about Drew and how things that happened outside of school affected his emotional growth and the teachers use that in class. Also, it was a way to keep us informed about his progress in class so that we could put into practice at home things his teachers were working on. It was a very symbiotic relationship. In addition it was necessary in order to explain to us just what the f*ck was the point of all the chaos. They put it to us like this: it’s like letting a genie out of a bottle. Obviously nobody in this school had ever watched “I Dream of Jeannie” because genies don’t look like rabid animals trying to break out of a cage. Our therapist explained further. They wanted to push Drew to get his emotions out so that they could help him identify them and then learn how to deal with them in an appropriate way. Sounds logical but when put into practice it’s really frightening. Forget ‘Saw VI’- I had my own horror show every day. I was in awe of the teachers. How they could handle 7 emotionally fragile children in such a calm and loving way was beyond me. I personally wished I could have given each of them 36 million dollars.
Despite all the insanity (and I quite literally mean that), Drew loved the school. I think he was particularly smitten with the teacher primarily assigned to his case. She was a 23-year-old blonde beauty who is the very definition of sweetness and light. I often wondered if Drew acted out just so that she would HAVE to restrain him. In addition to the 23 year old, Drew’s second teacher was just as young and beautiful. I got a sense from her that we were kindred spirits and would get along famously if it weren’t for that teacher/parent barrier the LD Center insisted on. I so wanted to take her out for a beer. This was our team and there they were – upbeat, positive and sunshine-y every morning before the madness began. I don’t know how they did it, but I knew for sure that Arnie didn’t mind morning drop-off at all. Luckily the school was on his way to work so he rearranged his schedule so he could take Drew in the morning. That left me with the opportunity to take Mary to first grade every day which I was glad for. I’m sure siblings can sometimes get lost in the shuffle and we never wanted that to happen to her. So, working together, Arnie and I came up with a good routine and we slowly eased into it. Unfortunately his normal 8-5 Monday through Friday work routine was taking a beating. On most days he didn’t get to work until 9:00 which meant he didn’t leave until at least 6:00 and with traffic he wasn’t getting home until 7- just in time for dinner and kissing the kids good night. Add to that our weekly therapy meetings that occurred on Thursdays around lunchtime and he was sacrificing a big chunk of time every week. But can it really be called a sacrifice when you’re having so much fun? Who knew family therapy could be so entertaining?