The day is done. It was a doozy. I’m going to start at the beginning to help me organize things. I’m still in a state of shock I think. Please bear with me, this my ramble a bit…

The Background

Since I’ve gotten a lot of new followers recently (thank you very much for that BTW), I’ll give a brief back story here…

I am married to the most wonderful woman in the world. Two years ago, we discovered that she had Asperger’s Syndrome (AS), which is a high functioning form of Autism. This diagnosis changed our lives and the way we saw things. It explained SO much of things that were going on with her that we had no explanation for. We have 3 boys, ages 14, 9, and 2 and she is due to give birth in September to our fourth and final boy.

Since her diagnosis, we have come to suspect that our boys also are somewhere on the Autism Spectrum, also high functioning. We’ve been having a hell of a time to find people where we live who will diagnose our children. The psychologist who diagnosed my wife has seen my kids when she’s had to bring them to her appointments and he’s confirmed that while he does not diagnose children, from what he sees, they are most likely on the spectrum as well.

Back in November, we took the youngest, lovingly referred to as Tantrum Tot and/or Tommaggedon, to a speech therapist at the referral of his primary physician. He was diagnosed with Severe Repetative Expressive Speech Delay. At the time he was barely 2 years old and they rated him at 11 months along in his development. This strengthened our belief that he was on the spectrum, and the person who diagnosed him, said she suspected Autism as well. His pediatrician referred us to a place in Charleston, SC, which is three hours away from us, for Autism screening. His words were “to confirm what he strongly suspects”, which was that our youngest son had some form of Autism.

The Trip

Today, we finally after much waiting (9 months of waiting) had the appointment.  I woke up at 4:30 in the morning today, after only having 16 hours of combined sleep for the week, got dressed, woke up my very pregnant wife, made my cappuccino and her coffee to go, went to pick up her mother and her boyfriend to stay with my other 2 boys, got the Tot dressed and in the van (he woke up and STAYED up) and we were on our way. Our appointment was at 8:45 a.m.

First, I got on I-95 South and missed the sign that said go THIS way to STAY on I-95 South. (I drive on i-95 NORTH everyday). I was on I-20 for about 15-20 minutes before my wife realized it and now we had to turn around and head back. Luckily there wasn’t much traffic at that time of the morning and I was able to MOVE IT MOVE IT.

(Oh yeah this was the first time we’ve taken the new van on an extended trip, which we were worried about since we’ve had problems with that model before. Click here to see the full post on that).

Along the way the wife gets hungry, (being 8 months pregnant does that to a person I guess), so we pull off the highway, and the wife sees a Subways sign…she now wants Subway’s…no argument allowed. We of course can’t find it. We’re losing time…the van starts doing something funny which made my blood run cold, my nerves are shot, so I pull a U turn at a busy intersection and when I do, I’m staring the stupid Subway’s in the face. We pull over, she runs in cause Tot fell asleep again right before we got there and I opted to stay in the van.

Now we’re behind schedule. Again, I’m moving it moving it. According to Tom Tom we’re still going to make it. Tot woke up again and is yelling in the back seat cause the sun is in his eyes, and we don’t have any Tot sized sunglasses with us. I valiantly give him mine, (my LAST pair which are polarized and I LOVE them, because I’m part color blind and when I put on dark shades, the world “washes out”, but these actually brighten things for me). He bends the crap out of them, but won’t wear them. We manage to find a long patch of shade and stay in it. He calms down. We’re still making it…we pull into the general area right on time.

The Visit

We find the building, and pull into the parking garage which apparently is attached to the medical center. However, it was a smack dab in the middle of this HUGE a$$ medical center and no one we asked knew where this particular office was. We had been trying to call them for the past 20 minutes prior to our arrival, to let them know how close we were. Because I swear to GOD if we got there a little late after 3 hours on the road and they tell us we’re not going to be seen there is going to be some CARNAGE going on! However, the number listed on the letter they sent us not only not picking up, it’s not connecting us at all!!!

So by the time we find the correct building, get upstairs and hit the receptionist area we are about 15-20 minutes late. Keep in mind this appointment was for a screening that would be FIVE hours long. I’m anxious and doing my Jedi/Samurai breathing techniques because I KNOW it’s coming…and sure enough the receptionist starts asking us questions followed by “Oh no, I don’t know if they’re going to see you now, you’re late”…I took my final deep breath, walked over and started to speak, but my wife was already giving her the run down!  “Look, we’ve been on the road for THREE hours, we tried calling, and your phones aren’t picking up, and it took us NINE MONTHS to get this appointment. We are NOT leaving here without being seen!” And through it all, she was very nice and calm about it too! GO HONEY!!! SO PROUD OF YOU!!!

Well we wind up being seen…Tot is behaving. We are in the first screening room, where they have a bunch of toys for the kids to play with. We’re being interviewed by three people, one a PhD and one doing her internship, and the other developmental pediatrician as well. Tot is behaving like a prince. He’s smiling, laughing, hugging….HUGGING! He ran into a few rough patches when he didn’t get his way, threw a little mini tantrum, not a meltdown, all while we’re being asked some very thorough questions by the person who is engaging Tot the whole time.

Now I must say this. I’ve been in doctors offices where the people treat you and your kids like they can’t wait till you leave so they can process your insurance forms. The exam, the visit, it’s only a formality on the way to their getting paid.  But these people were very kind, very compassionate and very very good communicators. They asked us questions, listened, asked for clarification, and didn’t utter a word of contradiction or try to shoot anything we said down.

They take him into another room with toys, ask us to please not interfere if we can help it. And begin to play with him and observe him. His interactions, what he does when he can’t get his way, how he plays, how he’s communicating with them.  After a while they let us take a 30 minute break for lunch with Tot in the cafe downstairs. (That experience could be a whole other blog post).

We come back up and they sit us down and lay it on us. Tantrum Tot does NOT display Autism. His social interactions are too involved to even consider it. Yes he has speech delay, but even that is being progressed rapidly since his introduction to day care. (Next week he starts going full time BTW). He looks them in the eye. He points to specific objects and clearly indicated he wanted more. He brought things to us to see, he brought them to them to see and show them what he had.

According to the scoring they did, on a scale of 1-10 with 10 being the highest and showing how severely he displayed Autism. He scored a 1. They said the difficulties they showed him manifest were most likely behavioral and could be corrected with appropriate intervention.

They were very considerate. They were not the least bit judgmental and never indicated his behavioral issues were the result of bad parenting. They gave us documentation on a program in our area which could continue to monitor Tot and possibly get us services based on the Speech Delay. Again, the quality of what they did and how they did it, were honestly the most humane experience I’ve had in this 8th yearr of being in SC.

We packed up the Tot, got the Tot and headed home.

Tot on Table