What a day. Yes it has been a WEEK since I have posted. Yes it has been a crazy week this week. I'm in a bit of a reflective spiritual mood as I feel like today, in the desperate hope to hear God loud and clear, I couldn't hear Him over my whining and spinning today.
Let's review the week.
Monday was Labor Day and we went to the book store and purchased the new OASIS guide. Later we went to ChikfilA which is crazy because we haven't gone there since we started the Gluten Free diet and we did not go to the one closest to the house. But there we were. I started reading the book and learning yet more and more about my son as he and the Younger are eating carrot raisin salad and french fries and the chicken meat from Dad's wrap. The Elder with his fingers, the Younger with everyone's forks as he kept accidentally dropping each one. In between nibbles, they are terrorizing our neighboring booth housing a 3 year old and his parents. As I'm constantly apologizing to them for the disruption and Eric's throwing his feet in the air to show the boy (or maybe the dad) his Thomas shoes-except failing to let them know that was why his feet were in their ears. Finally in a sweet gesture to help us get them to finish eating, the mom sent the dad and boy to the playground. Soon enough, the boys finished eating, earned their trip to the playground and played beautifully with the 3 yo boy. We befriended the parents and I was sooooo excited that the boys were playing so well together (they were pretending to be in a forest - I think because the stairs were green), that I knew I had to get her name and number to get them a play date. However she works during the day (just not on Labor Day). "Oh really, what do you do?" "I'm a teacher." "What grade?" "Special Ed." Wow, God puts these little angels in my path to comfort me as you know I'm still stressed about the whole school situation. She gave me some encouraging words and strategies that have worked really well in her classroom. Nice....
Tuesday - we had overnight company who were passing through TN Monday night and I spent breakfast, more like brunch-time, visiting and catching up with them. I got a little distracted that day, perhaps because my assistant stayed home sick that day and I didn't have a human reminder of work, and I missed a luncheon and I kind of dilly-dallyed in books and research. I spoke with my in law over the phone about why special education is a good thing, and got more information about Hub as a child and that side of the family. Got more and more overwhelmed by the additional information, cried, napped a little, googled for Asperger Adult Support (as I was culminating in NT meltdown) and found some amazing help. Someone to help us get Terry an official diagnosis AND who has a special interest in families of Aspergers. I felt such relief to find this psychologist! Nice... Got a horrible allergic reaction to something. Not so Nice...
Wednesday - Continue allergic reaction. Drug regimen not helping - not even knock-you-out benadryl (generic). Whipped out the Vicks Vapo. Helped a little. We discovered that reflexology really works with sinus pressure, but it also releases the flood gates. My nose and my eyes were raw from the drippiness. I hadn't had a reaction that big in years and even with cats it wouldn't last a whole day and typically ceased with one dose of drugs (and removal of cat). Eric showed empathy when I sneezed and groaned in misery as I was pretending to have fun helping him build a track for thomas. He said, "I'll be right back." and he came back with the largest wad of toilet paper for me to blow my nose!!! I was so impressed. Nice...
So the significance of this day in the week of crazy is that I didn't pick up the kids from school. I normally do, but there was a miscommunication and Cris adjusted her schedule and rushed home because she thought she was supposed to get the kids. Well I felt bad about the communication breakdown, plus I was still weepy from the allergies, plus I was in the middle of conversation with grandma, that I told her to just go ahead and get them. When she walks in, the first thing I asked was - how did Eric do? Especially after a long weekend AND the honeymoon week I wanted to make sure that everything was still fine. She said that no one said anything to her. Nice?
Thursday - I spent this day writing up a summary of an almost 14 year relationship I have with Terry for the psychologist who will diagnose him. It took all day. My assistant was there but I never saw her. Part of the write up included Eric and the year-long journey we had leading up to his diagnosis. Many of which was bad experiences with preschools and mothers of preschoolers. Put me in a great mood for Friday for our first chapter at Bible study. Nice...
Friday (today) - I take Eric to School, drop Ryan off at the church nursery and head to the Mom's Group bible study. (Last Friday I officially announced to the Group about Eric's diagnosis because I really needed some people praying for us.) So the study was really thought provoking-we are doing the Mary & Martha book (I can't remember the official title right now). Since I didn't get my book until this morning I hadn't prepared anything and just listened. I started to get overwhelmed again being reminded about my responsibility and feeling like I'm at a crossroads with so many things in my life - preschool, marriage, career, church, therapy, etc. I was getting dizzy trying to imagine the road map and making u-turns and 3 point turns and reverse, but never feeling like I was going forward. Then I spoke up. I don't know what exactly I said or if it made sense as I might have been more focused on not blubbering than making sense. I got lots of advice of stop trying to be in control (funny I don't feel in control at all!) and to not worry about my plans but pray that you are following God's plan. Yeah yeah yada yada (no I really did appreciate the reminder) but i'm thinking at that moment, I KNOW ALL THAT ALREADY. I'm praying for faith and patience and trust that it will all work out but I don't know which way to go at theses crossroads. I just need a little hint. Why can't I hear Him telling me which direction to go in?? Can You speak up a little??? Ok...breathe...we have prayer requests and I realize that my problems are my problems and everyone has their own problems and I just need to stop whining, accept it, it's just a molehill, an inconvenience - not a crisis, move on. I go to pick up Ryan from the nursery as we had about 20 minutes to kill before Eric was dismissed from school.
As I descend the stairs, the preschool director approaches me with the "we need to talk" look. My heart sank. Then my jaw fell open when they told me that on Wednesday (2 days ago) that Eric kicked a girl and left a mark on her chest and did something to a boy to make his head bleed. I'm like, um, why didn't anyone tell me on WEDNESDAY??? Then they proceeded to tell me that today there was a biting incident, a hair pulling incident, plus issues from last week (I'm thinking, it was just snack envy, right?), bottom line, they have had 5 ticked off parents call and complain to them about Eric and I found out today (long story short) that Eric is on "preschool probation" where he gets to come half a day and if anything happens he gets booted. Do people think it is not OK to tell me when my child hurts another child????
I was mad, hurt, and disappointed. I spoke to the teachers individually and none had read or listened to a single resource I had given them about the syndrome. They took advice from other people on how to handle Eric in the classroom, but never asked me, even when I specifically stayed after school everyday (except last wed when Cris got them) to ask how it was going. But if they don't call me when he bangs up other kids, why would they call me for advice. I'm embarrassed that I let Eric go there. I had been uncomfortable with it and I should have gone with my gut. I feared that with their ignorance of AS that they would look at him to be a trouble maker and then in turn manifest it. I can't explain why he is acting this way with them when he did great at VBS other than his VBS teachers never knew about the AS because we hadn't heard the final diagnosis yet. I guess I can explain it....Aspergers. I was on the phone literally from the time I got home a little after noon until after Terry got home from work with a teacher or director or Terry or the pediatrician or to a friend venting my brains out. We are going to an ASA meeting tomorrow, so I'm going to just look at what rights he has at this preschool, if any, and we have his evaluation in the County School system on Tuesday (finally!) so that he can resume his therapy. Now that we have documented problems at school, Eric might even be eligible for the county preschool. Hmmmm....teachers with experience with AS - now that excites me!
But tis my friend, Sheila, that got the ball rolling on my spiritual reflection of the crazy week. She quoted the movie "Evan Almighty" (see clip below) and since it was date night and the cynical dad had me craving wings, we went to dinner and movie, well, appetizers at the bar and the dollar theatre, to satisfy both cravings of hunger and entertainment. I walked away with a satisfied craving for peace and sanity in a crazy world that doesn't make sense right now, but in God's time it will. I just have to keep building my A.R.K.
Here is the original email blast that I sent with some names altered so I can't be accused of slander.
Interesting enough I looked up OCPD and it doesn't describe Eric or Terry, but fits me almost to a T! Ha ha!
---------- Forwarded message ----------
From: Jennifer P Higgins;
Date: Jun 29, 2007 9:00 PM
Subject: Update on Eric
To: Terry Higgins;
Hey! I know that each of you have gotten bits and pieces of the "saga" we've gone through this past year, and I'm happy to say that we finally are at a point where we can move forward!
Background on psychologists: Dr A is the most well respected child psych in East Tenn, so much that he is very difficult to get in to see (and his office is over an hour's drive away). When we found out that Eric may have an Autistic Spectrum Disorder in January, we call his office to get on the waiting list in February (we waited because we were in denial that Eric's quirkiness could be anything less than 3 year old quirkies). At that time they gave us a time frame (not an appointment) of "June-ish" - that they would call us then when his schedule opened up. Geez! So we waited and waited and waited and then Eric's therapist suggested another psych Dr. L who used to work with the KCS for like 11 or 12 years and had access to the ADOS testing which is the "official" test for Autistic Spectrum Disorder. We got into her office almost immediately. She saw Eric for a total of 3 hours of testing and finally came to the conclusion of nothing really. The GADS testing scales are specifically for Aspergers testing. On that he scored "High/Probable" and "Borderline." But she confidently ruled out Aspergers because the ADOS said so (no real explanation), she ruled out ADD, ADHD, and ODD (oppositional Defiant disorder). She did say that based on his intelligence testing, his Verbal and Non Verbal reasoning was above and well above average and his Spatial reasoning was on the low end of average which would contribute to frustration and therefore behavioral issues. We were probably looking at a personality disorder like OCPD, but that cannot be diagnosed until he was an adult. She referred Terry and me to other psychs for parenting help and marriage counseling.
Meanwhile, Dr A's office called us and we decided to go ahead and go see him as a second opinion since we finally got "in" and he was so reputable. After that appointment, we really liked him as a doctor, he made us feel validated in our concerns and he didn't make me feel like I was an inadequate parent. As for Eric, he immediately didn't suspect Aspergers based on observation of interactions and did all the testing that Dr L did except for the GADS and ADOS. He didn't have any background information from Dr L or the therapist when evaluating him so completely unbiased of previous evaluations. Today we went for the follow up (after all the test scores were compiled) and he was positive and optimistic about Eric. He went into a little more detail about his IQ, in nonverbal he scored 98th percentile (7 years and 4 months age equivalent) and IQ of 130 (127 is the cut off for giftedness). However one category (which I can't remember the name of it) he scored in the 68th percentile but what Dr A showed us was that is a composite score of basically his listening skills and his speaking skills which had a very wide margin, so the composite score was misleading. Basically his listening skills were low and speaking skill were high. In other words he could clearly tell us about an event (if it originated in his own mind to tell us) but if we asked him to tell us about an event, he couldn't process that to be able to tell us. Dr. A pointed out that that was an unusual pattern that usually people have stronger listening and comprehension than speaking (for example when we learn a foreign language, we tend to understand it better than we can speak it at first). So in combination of that, some sensory observations he made in his first evaluation, his high intelligence, some quirkiness he observed (hand flapping, for example), and Eric's intense focus on Letters, Numbers, and Trains, he concluded that he does indeed have Aspergers. Fortunately Eric's social dysfunction is very mild and he believes that with occupational and speech therapy that by kindergarten Eric will be totally integrated (for most it takes until 2nd-3rd grade). By that time, the only thing that Dr A predicts will be obviously aspergers will be his IQ.
So we are pleased to have a solution and a next step. I'm personally pleased that I don't have to feel like the bad parent who let's her children run wild. We know things could be worse so overall this is a good thing and I feel like we can close this chapter and move on with therapy and feel positive about our son instead of frustrated knowing that SOMETHING is going on but not know what it is nor how to handle it. We have already seen improvement since he began therapy in January and again in the last month (i think as he is "maturing" as next weekend he will be 4 - sniff). Gratefully Eric doesn't have a clue, he thinks therapy is "school" and with his speech improvements he did wonderfully in VBS and getting along in the classrooms! Who knows - he may fully integrate this year instead! =o)
Thanks for prayers!
Jen & Terry
For more information on Aspergers, Dr. A recommended the book by Tony Attwood.
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