Monday, October 8, 2007

My Current Truth: Part 1 - Tripp

It's been weeks since I posted. They've been hard weeks. It's time to get honest. I started this blog to help hold myself accountable and perhaps help some people along the way. I can't do either of those if I'm not being honest. So, take a little journey with me if you will. It may take a week for me to get it all posted - probably in three parts. Have patience as you read, and please, if you feel the urge to pray for me and my family - do it. Were it not for the prayers of friends and family and the amazing grace of God I'm not sure how we (or at least I) would have made it thus far without my sanity coming into question. So here we go.........Part 1 of My Current Truth: Tripp

I'm not sure whether to start at the current spot and then give history or bring you on my journey from January to present. I guess since many of you already know where we are I'll choose the first option.

About a month ago Tripp's speach therapist (Ginger) finally said that she thought it would be best to have him referred for evaluation by Scott & White's Austim Team in Temple. So, there's the hardest part. Autism. I can say it out loud without choking most of the time now. We don't have an actual diagnosis at this point and we can't get in to see the team until December 17th. But, I think you'll see as I share what got us to this point that it really doesn't matter what the team says - we've had to accept that our precious, brilliant, loving, number-obssessed boy just doesn't process the world the same way we do. Here's how we got to today........

Tripp has always been "laid back" about most things. His physical growth has always been normal (though he's a bit on the skinny side!). In truth, he was a breath of fresh air after Paris. Don't get me wrong, Paris is phenomenal from head to toe, heart and soul - but she was (is), shall we say, a bit more high maintenance than Tripp was as a baby and toddler. We often laughed and joked about how anal-retentive he seemed to be as he got older. He always lined up whatever toys he was playing with....perfectly straight. The cars would all be facing the right way and if he realized you had turned one around he would simply correct the error. He's always flapped his hands when he gets really excited and happy. He's always spent more time on his toes than his feet. All cute things that seemed to make Tripp the most adorable boy ever - and he is the most adorable boy ever!

Well, about a year ago Tripp started going to Sonshine school one day a week. He really didn't speak when school started. Once he got settled he seemed to really start blossoming. By the end of the first semester I remember thinking - finally, he's talking! He was a little over two then. The truth is, however, that he counted more than he talked. He acquired a few words like juice and please, but for the most part he just new his numbers and would count anything he could - he even counted when there was nothing to count. I decided to put him in for two days the next semester since he seemed to do so well and was at least using his voice for something other than the whiny-cry or grunt we had become accustomed to interpretting. We also started potty training over Christmas break - we're still working on that by the way.

Once school started back in January I started to put some things together in my brain (remember, I have a psych degree), and I was a little unsure about what the picture was turning out to be. The counting increased quite a bit. Tripper truly has a gift with numbers. I realized though that he was using numbers to self soothe. Then the poop smearing started. We went through several months where every so often Tripp would poop during "rest time" and paint his room with it. This is when I started to loose it I think. I did everything I knew to stop this behavior. I even spanked him - it didn't seem to register and the look of pain on his face was pure torture. After one such experience I found myself laying in his bed with him, trying to calm his tears and wails and I just started crying with him. I remember saying along the way to both my mom and my friend Dasha that I was afraid I was going to screw him up. That allowing him to obssess over numbers combined with my reactions of extreme frustration over the potty training challenges was going to really just screw him up.

In late spring I decided to take him in to the pediatrician. He had been having a lot of snot off and on since like October. I thought he had allergies, but I was tired of wiping his nose non-stop so we went to the doctor. He had a sinus infection - bad mommy, he'd probably had it for 3 or more months by the time I took him to the doctor. To my credit, he never ran a fever and the snot would come and go so I didn't think too much of it. Anyway, at the encouragement of my mom I decided to talk to the pediatrician about my concerns when it came to his speech development and behavior. What I told the pedi was essentially this:

He plays with his poop. He tippy toes. He counts things endlessly. He lines things up precisely. He has a very short list of people he will make eye contact with or allow to interact with him. He knows numbers, letter, shapes, colors - but he can't have anything resembling a conversation. I haven't cut his nails in over a year because he chews on them. I know that any of these things by itself is nothing to be concerned about, but when I put it all together I'm conerned. What do you think?

He said, "I assume your conerned about Autism Spectrum Disorder?"

Me: Well, yes. I just don't want to over react, but I don't want to dismiss things either. Maybe my degree is just making my paranoid.

He said,"Well, it probably is making you a little more sensitive to what seem like red flags to you. You know, we really can't tell about Autism much until kids start school and we really get to see them along side other kids their age. I think we should just keep an eye on things and see how it goes."

I should really not use quotations there - that's from my memory, so I'm sure it's not EXACTLY what he said. And just in case youaren't sure about my thoughts on his opinion - I think it's a bunch of poo.

Me: OK. Well, what about his speech? Do you think he's on target for his age?

At this point I began to sense that he was slightly tired of our conversation and he said that we could "go ahead and do a referral to speech if it would make me feel better." At least it made me feel like I was doing something so I jumped on it.

I think that's when reality started to settle in for me. Our first session with Ginger was wonderful. She listened to everything I needed to say. More importantly, she watched Tripp. She interacted (or at least tried to) with Tripp. She didn't just chat with me while he milled about. Instead she focused on him while I answered her questions as best as I could. By the end of the session she was telling me that when we were ready she could refer him to see the Autism team in Temple. No business about him being too young - just an offer to help when the time came.

We've been seeing Ginger for several months now. About two and a half months ago as she was working with him during our normal time with her and she asked if we wanted to go see the team or if we felt good about the progress we were making. I wasn't ready and I hadn't really talked much with Easy about it so I told her I wanted to stick to what we were doing, but I wanted her assurance that when she felt like we needed to go she would tell me. Her response changed my world. She said, "Of course I will. I think it will be in the relative near future."

During the next month alot happened. Tripp spent a week with my folks (with his sibings) and his reaction to being away from us was hard. It took him nearly a month to re-bond with his daddy. It seemed that only I could do anything for him without him melting into a pile of tears on the floor. It slowly got better and he and Easy are back to their normal deal now. I had a long talk with my mom and after having a week engulfed in "Trippness" she said that she thought he would probably wear an ASD label at some point. That was hard to hear, but I trust my mom's opinion about kids after all the years she spent in education - some with an Autism unit on her campus. I processed stuff personally all month and then finally found the courage to talk with Easy. I told him that I fully expected Ginger to say it was time the next time we went in. It was a hard conversation. It was painful for both of us. In the end we decided that we would indeed go if Ginger felt it was appropriate.

Well, she did think it was time so we started the proces sof referral. It took 4 weeks to find out when our appointment is, and as I said at the beginning of this - it isn't until December. So now we are waiting. We don't know what to expect but there are a few things we know to be true:

God is good.

God made Tripp exactly the way he is.

God is good.

It doesn't matter what label our son does or doesn't need, we could never love him any less.

God is good.

Tripp brings joy to this world.

God is good.

Easy and I are united in praying for God's will in this situation.

God is good.

At the moment that is what I'm hanging on to.


Stephanie said...

Love and hugs to you and Easy. We are praying for y'all. Tripp is the most precious little fellow I know. Love you.

Perkins said...

"Look into the eyes of a child, what do you see? The kingdom of heaven belongs to such as these. A heart so sweet and so pure, a soul so meek and so mild. Look closely, see the Lord in the eyes of a child."

I think of that line in the song Michael wrote and think of sweet little ones like Tripp. He is an angel.

We'll be praying for you all. Love you, sister.

debralynne said...

Hang in there and know that we are praying for you guys. I know it's hard, but I'm here for you any time you need me. Just call.

God is still in the miracle working business.

jenny said...

I haven't been able to check in on your blog (or any blog!) lately (it's busy, you know!), but I had to check after your e-mail.

This might not strike you as being related to your struggles, but it touched me this evening. I put it here in case anyone else wanted to read it.

The post for October 9th was just wonderful.

God is good. He's been leading you to the place you are, and equipping you. He's already got your plan laid out.

I'll be praying for you all.

Irene said...

I love you, Sarah. My heart aches for you and Easy b/c I remember how enormous those early moments are. It gets better. It gets easier and yes God is SO VERY good! I love you.

Nellie's Nuggets said...

In His presence there is peace. In His presence there is joy. In His presence there is love.

Love you!