We've had a big social media push for Kevin's annual fundraiser with the PGA throughout the past week. He is currently playing those 100 holes on this mild October day, and so far, so good! While in church yesterday, I had a little nudge to finally tell the story. The absence from the blog has been in part due to this journey and in part to the fact that my design work suddenly went from part time to full time in a blink of an eye.
John William had a pretty significant speech delay that I was well aware of, but kept ignoring because he was a boy. All the boy moms kept telling me that they develop later, that he was the baby of three, that the girls are talking for him (and they were)...but he'll get it. He never did. Daddy said he talked Sioux, he truly was talking by sounds (most were not distinguishable) and by pointing and pushing us around. Behavior started becoming more of an issue because of his (and our) frustration. Something had to give.
I happened to have a contact at the WKU speech clinic and she got us in for the summer session in 2014. It was twice a week for four weeks. Upon completion, we had words forming, and had made wonderful progress. Great strides were made (and quickly) when speech intervention consisted of two 45 minute sessions/week.
We had a routine check up with our pediatric asthma/allergy doctor. (JW was diagnosed with asthma at age 2.) After waiting for the doctor for over an hour in our exam room, John William had reached his tipping point. When the doc entered and attempted the exam, JW was very resistant and uncooperative. We walked out of that exam with a recommendation to have him screened for Autism Spectrum Disorder (ASD). I left in shock and got in the car and fell apart. I remember Kevin and I debating about what do to and ultimately decided to schedule the screening, because we were confident we were going to rule it out.
We had completed the initial screening in Bowling Green and left that doctors office with a report that detailed lots of behavior observations and ultimately concluded that he was high risk for ASD. She recommended a more extensive evaluation to be done at the University of Louisville or Vanderbilt, along with a host of other things to do in Bowling Green in the mean time. Now, more confused than ever, we were at a bigger crossroad, and weren't sure what do to first, or how, or when. Our speech supervisors at WKU recommended a second opinion/evaluation. Daddy gave us the final push for a second eval while we were together for Thanksgiving.
The second evaluation was by a professor (Doctor of Psychology) at WKU that works closely with the assessment and intervention issues in early childhood. He said with confidence that he would not put JW on the spectrum because he was too social. However, he did note that there were developmental delays, and to continue with our speech therapy and to pursue the public preschool program in Bowling Green (which was a recommendation from the first eval). I began the process of admitting him into the public preschool, which at the age of 3, is need based, and speech is a qualifying need.
I'd like to add that by now, I'm an emotional basket case. One doc says he's high risk, one says he's not...speech delay...developmental delay. Do this, do that, talk to this person, see that person... Oh, and pull him out of the preschool that both of the girls graduated from, and is at our church. I absolutely adored every person there, and they all absolutely adored my son.
Public preschool (TC Cherry) turned out to be a perfect fit for John William. We were still doing speech therapy at WKU. An end of the year eval by the school (which was apparently required) told us that by state standards, his speech is considered to be average for his age. DISMISSED. More confusion. How are we still tackling issues at the clinic, yet the state says he was on target for his age? Where will we do preschool now? I've learned by this point that he needs a highly structured, daily routine, and a part time program just won't work for him.
Start occupational therapy, continue speech therapy. Enroll him in a local private, full time preschool.
The preschool director calls to see if I can come in to meet with her and the teacher, John William is having some behavorial issues in the classroom. I want to crawl in a hole. Will this child ever catch a break? I elected to have full disclosure with them about what the last year has been like and left my 2" binder with all the evaluations and reports with the director. We decided to have a follow up meeting with each other after fall break and she reassured me that they were going to do all they could do to help John William. We thought that we (me, the director, the teacher and occupational therapist) could come up with a plan to make the day smoother for everyone. This was a Christian preschool, and she ended the meeting with a very sweet prayer, and I was feeling pretty darn confident walking out of that building.
At the follow up meeting I was met with "we don't have the resources to help your son". DISMISSED. That was a relatively short meeting, and the only thing I really remember telling them was that we had paid tuition through October 31, and he would attend until the end of the month. I got in my car and had the melt down of all melt downs. My heart was absolutely broken for John William. How did we get here? We seriously were just kicked out of preschool??? I drove straight to Potter Gray (where the girls attend) and waited for Mary Douglas' class to go to an elective and went and cried on the shoulder of her teacher, who was also Caroline's kindergarten teacher, and who I trusted for guidance. I knew that John William belonged at TC Cherry, but we had to figure out how qualify him again.
More evaluations and meetings to get him back into public preschool at TC Cherry. Lots of hoops to jump through. It was during this time that we were introduced to the director of the Big Red School, and she was instrumental in guiding us through that process with evaluations. The Big Red School had been recommended for JW way back when we had the very first eval, and I immediately put him on the waiting list. I got the call for him to attend earlier that summer of 2015, but declined since we were on track to attend a full time preschool at that point. Big Red is part time, and I just couldn't see how I could piece it all together, and make it make sense for JW. Oh, how I wish we had jumped on board when I got that call! Big Red is a program through WKU's Clinical Education Complex and is a classroom environment with typical and non-typical kids. Non-typical kids needs range from mild to severe, and there are WKU students and staff supervisors, in abundance, in this classroom.
We were back at TC Cherry! Still in speech therapy. We also attended Big Red two afternoons a week, and those days were the highlight of his week. He LOVED Big Red School. I'm still more confused than ever. Is there something really going on with my son? Is it ASD? If not, what? I'm on board with the developmental delay, I can see the delay in processing with him, he was not up to par with fine motor skills, but what is it? Why has this journey been so long and laborious? Whatever it was, John William is so mild...so loving...so sweet...so social with friends. I don't get it.
We had been in such limbo for so long about what is or isn't with JW, I pressed for the more extensive evaluation at Vanderbilt. I was ready to meet whatever it was head on, or put this all to bed once and for all. That came fairly quickly as we were admitted into an research study. It had to do with the development of an ap as a early screener for ASD. In return, we were able to have a full evaluation with doctors at Vandy. They concluded, once and for all, that he was on the spectrum, but very high functioning.
Occupational Therapy. Behavior Therapy. Big Red School. We took a break from speech for the first time in two years. We've made tremendous progress with language, but this kid was about to meet his therapy threshold. I hit OT and BT hard this summer because we had decided to send him on to kindergarten, with the plan of him repeating. We were sort of backed into a corner with this decision, and I still wrestle with it. By state standards, he was of age to start kindergarten, therefore we could not repeat public preschool. Legally, he had to go on to kindergarten. However, he was in no way, shape or form ready, socially or academically. As a parent, this is gut wrenching. Am I setting him up for failure? What will he do if he can't keep up? Will he notice? Will he rebel? Will he be so good all day and be a terror after school from sheer exhaustion? Again....how did I get here????
The start of school was a bit rocky. Lots of expectations when you go to big school. Thankfully, we have lots of support from the staff and his teachers. We elected to put him into the class with the same teacher that the girls had, the one I ran to in tears the year before. The relationship was already in place, and I trusted her. Her aid happens to be one of the best people ever, and we love her as well. He is in great hands up there. However, it doesn't take the worry and fear out of me. I've gone from having 100% control over his schedule, his therapy, who he is with, etc., to now I have none. I know every kindergarten mom feels this on the first day of school, but I can honestly say, especially having had two kids who are completely on track, letting go of this one was much, much harder. He's my buddy. MY buddy.
So here we are. We have good days and bad days. If you were to meet John William today, one may easily think he's completely normal, and you know what, he is. It is HIS normal. He still gets to attend Big Red School one afternoon a week after school, and it is still his favorite day of the week. We still wrestle with what is the right diagnosis for him. Everyone that works with and interacts with him seem certain that it isn't ASD. For now is IEP still reads Developmental Delay. We have built in breaks in his day and some one-on-one help with morning work, and is doing great! His name has gone from a squiggle line to legible letters in a months time. He has a hard time recalling the letters in his name, but we will get there. When things click in that little mind of his, he's golden. But it's all in his time.
So. Back to the 100 holes. After our time at the Big Red School, it was obvious who Kevin's charity would be. Once Kevin's fundraising efforts have concluded (you can still donate even after today), the PGA will keep half of the money for their REACH initiatives (helping youth in golf) and the other half goes directly to the Big Red School. If you are still reading...thank you! This journey has been long, but I would do it all over again...in a heartbeat.