Monday, December 17, 2007

I Really Don't Know

what to title this post.

At this moment my gut wants to post the short, just the facts version of how our visit to Temple went today. In an effort to be a little more authentic however - here's how the last 26+ hours have gone.

Saturday night I had trouble going to sleep. All I could think was "what do I pack?" I mean seriously, what do you wear to this appointment?!? I'd love to go comfy and pack sweats, but I'm afraid that would send the "I don't really care and I'm over-extended so I won't be much help for my son" message. I also don't want to go too put together because that could send an "I run a tight ship, have it all together at all times and accept nothing less - so I won't be much help for my son" message. Not a lot of sleep happened. ( I ended up packing jeanes, sneakers, and a button down collared shirt.)

We got all packed and ready to leave yesterday afternoon. Tripp was kind of wild all day, but we figured he'd zonk out in the car. I had gone in to "quiet mode." That's what I do when I'm facing a reality that is hard. (like the day my mom left to go home each time after I had a baby) It's a combination of fear, sadness, and a host of other emotions. I walked around to where my dad was sitting and gave him a wave good bye. He grabbed my hand and said "I'll be prayin' for you." I cried as I walked out the door.

We get all loaded and head out. Tripp seemed overjoyed to have Mommy & Daddy to himself. In fact, he was pretty much in Tripp heaven. Mommy, Daddy, Elmo, Blanket, and the Video Now Jr - does it get any better? The trip was uneventful itself. Our Monkey did NOT take a nap in the car. We picked up fast-food dinner and checked into our motel. We went cheap (like we had a choice!) since it was just one night. The Econolodge was, well, an Econolodge. It was clean.

Tripp thought it was the coolest place ever. He was pinging off the walls. There was more tippy-toe monkey dancin' than I've seen in quite some time. He even kept running into the closet and back out like he'd found a secret hiding place or something. My genius husband had packed his laptop and Tripp's favorite movies so that helped us calm him down enough to eat his dinner and then go to bed. He wasn't too happy that Mommy & Daddy were sleeping in the big bed and he was sleeping in his Winnie the Pooh bed, but he got over it and went to sleep by 9:00.

I turned the TV off at 10:00. I know I was still awake at 10:45. I slept for a while, but from about 3:00 on it was in 20 minutes spurts. There was no alarm clock in the room so we were relying on my watch and Easy's phone to wake us. I was terrified we'd over sleep. We didn't - everyone was up and ready to hit the road at 7:30 which gave us plenty of time to get we thought.

We drove over to the address we had been given. Turns out the the ENTIRE Scott & White medical facility has one address. It also turns out that the valet at the hopsital gives incorrect directions to the pediatric clinic. As does the receptionist at the main clinic information desk. We got to our appointment after WAY too much walking in the cold about 15 minutes late. Fortunately no one complained about our tardiness - I may have blown a gasket if they had.

So, we check in, wait all of three minutes and meet Dr. Montogmery, the psychologist that is the first point of contact on the Autism Team. Our time with her was, well, anticlimatic. (not sure I spelled that right, but I assume you know what I mean) She did a lengthy background interview. There was no paperwork to fill out. The interview felt as much like a conversation as anything else. She choose to not do any testing since he has his appointment for testing through the school district on Wednesday.

So, here's the bottom line based on our interview...........he WILL clinically be on "the spectrum." As for exactly which box on the spectrum we don't know yet. Her inclination is that he will eventually be given the diagnosis of Asperger's. At the moment, however, he is a bit young to be given that label so as we continue throught this process we may be given "high-functioning autism" as our label. So, there you go. And there I sat, hearing the words I expected to hear, and still I found tears streaming down my face. I was surprised by them. It's not like I didn't know it was coming. I don't know if it was that last little part of me that had been hoping this was all a dream finally letting go, or maybe it was simply relief that I am not crazy and the things I've been concerned about are real. Regardless of where the tears came from, they were needed in that moment, and then they passed as we started making a plan.

Here's the really good news........Dr. Montgomery will be coming to College Station once a month starting in January!!! She is referring us to see Dr. Hall, the developmental pediatrician. She said we don't really NEED him at this point, but we will eventually so it's better to see him now and stay in touch as Tripp gets older so he will be "on board" from the beginning. I am supposed to email her after his assessments on Wednesday and let her know exactly what tests they did. If she feels the need to do any additional tests she will work us in on her January visit to CS. We have appointments already booked with her for February and March. She had VERY positive things to say about our school district. There are a lot of more technical things I could tell you about treatment approaches and recommendations and upcoming changes, but I'll save all that for another post.

At this moment I feel pretty good. I am releived that I'm not nuts. As I typed this I fought back tears more than once, and I'm sure that will continue throughout this process. That's just part of being mom. I'm tired, I'm hoping to go to bed early, maybe I'll even go to sleep. Keep those prayers going, we've got a long week and absolutely NONE of it is part of Tripp's normal routine. Pray for my patience, endurance, and please pray for peace in my precious son's mind as his world each day will simply not be what he is expecting.

Tuesday, December 11, 2007


What do you want first, the good or the sigh? Sorry, you don't get to pick. We'll go with the sigh first.

I somehow managed to be a little early picking the littles up from school today. I got Vivie from class and found that her cold was getting worse and suspected a rising fever. I headed down the hall to get the Monkey and since the Bug was in a trance in her stroller I decided to peep through the window and try to see what he was doing before he saw me. I saw his teacher and most of the other kids in the class on their knees scooting around acting like a choo choo train. I even heard her call out to Tripp to try and get him to join. I looked around excited to see him act like a train. I looked, and looked, and then I saw my boy. He was laying on the floor flicking his fingers up and down like he was counting something only he was aware of and compeletely ignoring all that was going on around him.

I've never been punched in the gut, but I can imagine what I felt in that moment was pretty close to it. I watched a little more and he did eventually get off the floor, but it wasn't to play choo choo. He went where I couldn't see him anymore so I really don't know what he did. Then I got spotted by one of the little girls in the class so I went ahead and went in. I was greeted with a "Hi Mommy." and he was perfectly happy to gather his things and head home. I couldn't shake that sinking feeling though.

When we got home I got them both down for a nap and went and checked the mail. I turned in the paperwork I had ready to the school district today and left a note that I had still not received anything from the psychologist to fill out. Well, it was in the mailbox when I got home! So I opened it up and was hit by another heart sinking moment. There was nothing special about the paperwork itself, it was just so official. The questionnaires were real - you know, professionally printed. The title on one of them rang a bell in my head as an instrument I had learned about at some point in my education. It all just seemed so big at that moment. I shoved it all back in the envelope and threw it on the couch. Sigh..................

Now, here's the good bit. I took my sweet Monkey to have his hearing tested last Wednesday. I was a bit anxious about how it would go given his sensitivity to sounds and detest of things covering his ears. I was sitting in the little booth when the Dr. came in. The first thing she said to me was," I've been reviewing Ginger's notes." I about fell out of the chair. Ginger is our speech therapist. She is the angel God put on my team. She didn't even do the referral for the hearing test, our pedi did. The week before we had a session with Ginger and she apparently made a point of making contact with the audiologist and sharing her notes with her. Dr. Dubona didn't even attempt to put the headphones on my son. She felt like it would just frustrate him and then make it even harder to try another option. Praise God! Praise him for Ginger who is so clearly an angel for my family and praise Him for the audiologist who took the time to read before she walked in the door.

She did the test by having sounds come out of different speakers and when he turned to the sound she would make a little animal dance to reinforce his response. Tripp, being Tripp quickly figured out who was making the animals dance and tried to pick out a pattern. He kept looking at her through the window and saying "Do duh bunny!" as he pointed at it. Of course, she couldn't do it if he was asking for it. Then at one point he wasn't turning his head to the noise but said instead "Whassat?" She came through the speakers laughing a bit and assured me that would count as a hearing response! Needless to say, he passed his hearing test and she gave me a copy of the results before I left the office. I honestly can't imagine how it could've gone smoother. I did find it interesting that he responded better to the white noise sounds than he did to her voice calling out his name. Odd.

And by the way, I did get all that paperwork back out and I filled it out tonight. I'll drop it off tomorrow or Thursday. (tomorrow will be hectic between Vivie's sickness and my Nana moving into Bluebonnet here in town) Keep those prayers going. Things seems to be getting more hectic everyday. I'm holding my breath to see if Tripp will catch the cold (?) that Paris seems to have passed to Vivie. Sickness always makes him act weird. Of course, in the midst of these assessments that could work to our advantage I suppose. Pray, pray, pray - I know God's the one keeping me from loosing what's left of my mind so please, pray for us as the month speeds up.

Monday, December 3, 2007

Verbs, Siblings, and a Busy Month

Well, the Monkey has been doing VERY well as of late. I'm happy to report that we have verbs! To some of you that mat sound very strange, but for Tripp to actually use a verb is really impressive. The two verbs he is using most are "run" and "flying." He's also using "go fast" and has used "scream." They are usually used when talking about himself, (Wook, I run!, Mommy I scream.) but he has a few times used them regarding someone else (Skeeter flying!). I know verbs are not the most exciting thing in the world, but since my last post I have done many a happy dance for verbs!

Siblings........well, as usual Monkey is tolerating Bug and LOVING Goose. Well, he loves Goose most of the time. Sadly, when you love someone, you spend a lot of time with them and you inevitably hit a point in time when the love isn't brimming over and you get flat annoyed. That happened last week in our house. I was upstairs getting the first of our Christmas decorations out when I hear Monkey's "I am really unhappy about what is being done to me" whine/cry immediately followed by Goose's "holy cow I am really hurt and scared" scream. Being half way down our spiral stair with arms full of stuff I though quick and decided it was best to shove it all back on the landing (thank goodness we don't have that railing up yet) and go as quickly as possible to the scene of the crime. I knew what had happened as soon as I saw Goose. Her hand was over her mouth and nose and blood was running down her chin. See, Tripp is a headbutter. (that looks funny when you type it out - maybe I'm spelling it wrong) Up until last week the only person he had headbutted intentionally was me - usually in the gut and since I have some cushion in that region it hadn't been that big of an issue. He has given a few of us the wayward headbut (just ask Nana!) and left bruises, but really nothing intentional...until last week. Apparently Goose was trying to force him to sit in her lap and received two butts to the face in rapid succsesion. It was ugly and they were both VERY upset. Monkey went to decompress in his room and was reminded that "We do NOT headbut our sisters!" Goose got an ice pack and at the end of our lengthy discussion about what had transpired said that she had indeed learned a lesson. What lesson did she learn? "Let go!"

Since I told a somehwat "ugly" story I'll tell a cute one too. Tripp has learned how to open his closet and turn on the light. So, now, every night, we go through a process of getting him out of the closet where he is playing and back in bed a few times before he actually goes to sleep. One of the first nights this was going on I decided he could get back up and hang with me and Daddy for a while. We don't get much time with just him so I figured it would be nice. He snuggled down in the couch between us with his calculator and looked very happy. Then has says,"Wet's count backwards. Mommy, 40." So, I counted backwards from 40. "Wet's count backwards. Daddy, 61." So Easy counted backwards from 61. He skipped a number to see if Monkey would notice - he didn't, which was a testament to how tired he really was. "Wet's count backwards. Twup (that's Tripp in his language) 100." And he sat there and counted all the way down to 0. He then did some multiplication on his calculator with his daddy before heading back to bed peacfully and not making another peep until the next morning. I'm still trying to figure out if he saved 100 for himself just for fun or if he doubts our ability to do it properly. Either way, it was cute and we enjoyed the time with him!

Busy will definitely be that! Let's see, we have a hearing test on Wednesday. That ought to be fun. Not sure how he will respond and since he doesn't really follow directions outside of his routine it should be an inetersting experience. We have to have it done for the school district as a "rule out." Then, on the 17th we go to Temple for the first meeting with the Autism Team at Scott & White. I dreamed the other day that we went and they told me that there was absolutely nothing wrong with my child and said they thought I had Munchausen's (sp?) Syndrome. That's where the mom acutally makes her child sick for attention. Nice. I think since he's been doing so well with his language development that my brain was starting the whole "maybe he's really fine and I'm crazy" thing again. Then on the 19th we start the assessments for the school district. Their diagnostician has already contacted our preschool and will be observing him therein addition to her time with him one-on-one. The district psychologist has sent me some paperwork and will be in touch soon to schedule her part as well. She may even do her interview with me on the 19th while he's getting observed by the diag and speech person. That's a lot before Christmas, don't you think? It's good though.

I feel like we will be starting 2008 on the road to finding the best way to connect with and teach our sweet Monkey. The book our speech therapist loaned me really had some good stuff in it. It really focused on joining your child's world instead of trying to make them fit into yours. I did some simple things like just imitate the sounds he was making when he was in "the zone" one night and he immediately stopped, made eye contact, and smiled at me. Of course he then went right back to walking on his tiptoes in a circle, flashing his fingers in front of his face, and repeating the language from our cash register toy. That instant when he connected with me was amazing though. The look on his face was absolutely beautiful. And it gave me such joy to realize that when he's completely gone into his own little world, I can join him and connect - even if just for a few seconds. I better run. The critters are all getting hungry. I'll try to post after each appoitnment. Pray for us all this month. There will be a lot of running the roads, and a lot less of our regular routine so it could get dicey. Have a great week and don't forget to stop and Monkey Dance every now and then.

Sunday, November 11, 2007

Quite a Week!

It's been quite a week around here when it comes to life with Monkey. I'll try and keep this as concise as possible..........

Tuesday we had his 3-year well-check/ear infection follow-up appointment with our pediatrician. Let me start by saying that I really do like our pediatrician and how he cares for the physical health of my children........except when it comes to Monkey Dancin'. It was yet another visit that left me feeling like our pedi, who is otherwise fabulous, just doesn't quite "get it" when it comes to Tripp and his quirkiness. We were going through all the basic developmental questions and as he was asking me about language stuff and I was giving honest answers he was looking at me sort of confused. I finally said, "I'm not sure if you have it in your notes there, but we have an appointment with the Autism Team in December." His response......."Really?" Like he didn't sign the referral forms!!! He asked if was the team in Temple and I said yes and he made a little note and we continued. I will say that at that point he started watching Tripp more than just talking to me so I guess that was good. We get down to the ear check and he looks in both, looking extra hard in the right one, and then says to me, "Has he complained at all about having ear pain?" Hello?!?!? My response..."He doesn't complain about pain ever." Him: "Hmmm." Me: "Now, what I can tell you is that as he took the last round of antibiotics he seemed to get better. He started using his words more, and he even was interacting with us way more than we are used too. Yesterday, however, that all stopped and he spent the day either focused on his calculator or melting into tears on the living room floor." In the end he said something like "Well, since he doesn't show you much, but he is showing you what he does show you, we'll go ahead and treat it." So we got put on a 10-day round of Augmentin (yuck!). The cool part is that on about day 3 some AMAZING stuff happened. Are you might want to sit down..........this is big................


I'm talking an actual conversation! Tripp listened and said "yes" to some questions at the appropriate times and then said "I love you" and "Bye Dadoo." HUGE!!!!! I literally was laughing and crying all at the same time. It was the most beautiful thing I'd ever heard. To top it off he then walked past his daddy and said "Daddy, what you eatin'?" I nearly fell off the couch.

Needless to say, I think keeping Tripp healthy is going to be VERY important in this journey.

In other news......we had our first meeting with the school district folks on Wednesday morning. I met the diagnostician and the speech pathologist and I really liked both of them. They asked me a lot of questions and watched Tripp as he ran around finding numbers and counting things. They tried to engage in him in some activity, but to him they didn't seem to exist. I like the way they handled everything and at the end we all agreed that he is going to be evaluated completely by the diagnostician, the speech pathologist, and the district psychologist. Unfortunately, before they can start any of that I need to get his hearing checked so they can rule out a hearing impariment. We need to finish the antibiotics before we do that so we know his ears are clear when we have it done. Our pedi had even said (not sure why, but he did) that if we were testing his hearing the day we were there he probably wouldn't pass with that much fluid behind his ear.

So, we are waiting again. We have a follow-up with the pedi a week from tomorrow. If his ears are clear we will get a referral to the audiologist to have his hearing tested. Once that's done we will call the district back and start scheduleling the evaluations. The good news is that the district is bound by law to complete the evaluation process in a finite amount of time. If he qualifies for services through the distrcit we will know and have access to them by February. Yea! I'm also thinking about asking (pushing) our pedi to give us a referral to ENT. The doctor that treated Vivie was fabulous. I'm thinking it would be good to just have him checked out. He was sick ALL winter last year with a sinus infection that we didn't know he had and this first cold of the season has resulted in two rounds of antibiotics. I'm realizing now that when he's sick we regress. Regressing is bad. It might not bother me so much if it just meant 10 days of feeling bad and being grouchy, but he really goes into himself and I'm afraid he might not come back out. Besides, if he's going backwards he can't go forwards and we loose valuable time. I know I can't keep him from getting colds, but I'm thinking it couldn't hurt to see if there are some kind of structural issues that cause his colds to turn into infections (ear or sinus) every time.

OK, there's the catch up. He had a good weekend, but seemed a little frustrated and was really hanging on to his calculator at Bible Hour tonight. I had to physically carry him in and put him in the chair. He was, of course, fine when we picked him up. I'm praying for a happy, healthy week with more of this conversation stuff. It really was amazing.

Monday, November 5, 2007

For My Monkey (and my sanity)

Well, I suppose the last thing I need is another blog, but it seems somehow the right things at the moment. For those of you that haven't been reading my Temple Remodel blog I'll give you a quick history. Over the last 8 months or so we have begun to have some concerns about our son's development. A few mnonths ago he was referred to be evaluated by Scott & White's Autism team. This was not a huge shock, but painful to hear nonetheless. The last 8 weeks have been hard.

Today, I decided to start this blog in order to provide myself a place of release. I didn't want my Temple blog (which is supposed to be about my journey toward physical, mental, and spiritual health) or my Sarah Station blog (which is just about the fun things that happen in our family) to be taken over by this journey we are on with Tripp. So I'm giving it its own space. I'm sure there will be many times that my blogs overlap, but creating this one makes me feel like I am in some way preserving normalcy by not allowing this part of our family's journey to become the only part I see.

So....this blog is for my Monkey. In case you are unware, Paris is my Goose, Tripp is my Monkey, and Vivian is my Bug. Call me weird - I don't care. My children are all so special and they each wound up with their own special name.

Today is what I would call a "two steps back" kind of day. Tripp had a dynamic week the last week. He seemed to come out of his world and interact with ours more than he has in a long time. He was using his words in appropriate ways - answering questions, and even showing (and voicing!) concern for his baby sister. "What happened to Vivie?" is what he said. I nearly fell off the bed I was so amazed by that simple sentence. Then we woke up this morning. It's been a day of few words, lots of tears, lots of whining in a pile on the floor. The one word we've heard a lot today is "Mommy." Imagine it in a whiny, sing-song sort of tone. Then repeat about 500 million times. That's my day today.

It should be an interesting week. He has his 3-year well check tomorrow at 2:00. Then on Wednesday we meet with the school district's diagnostician to start the process of evaluation through them. I'm hoping this will result in him receiving services through the district. It's strange, part of me hopes he's having a day like today when we go in so they will understand my concerns. Then there's that part of me that wants him to shine through all the evals so in the end we're told he's really just fine. It's a catch 22. I don't really want him to NEED help, but I know he does so I want him to get all that's available.

I better run. Monkey is "resting" - he doesn't actually nap anymore unless he's sick. Bug is playing happily and I have a brief period of time where I can indulge myself with my soap opera before we have to leave to pick up Goose from school. Have a good week, and pray that we do too.