The "A" Word

Sumner's results from testing and my meeting with the psychologist were surprising and yet not on Friday. Sumner took the ADOS and his score was a 1, with 7-8 being the diagnosis level for him to be considered autistic. She just kept commenting on how delightful he was one on one, and he was really excited about an abstract book she showed him that is geared for older children. She did note some issues with facial expression, and saw more behaviors when she observed him at daycare, but it is very clear he is not autistic.

That being said, she confirmed in a very strong way what we already knew: his sensory scores remain off the charts. She said "he has sensory processing disorder, and generalized anxiety secondary to the sensory issues." SPD is not yet recognized in the DSM, which makes things more difficult from a school-standpoint. Luckily, he has qualified and is on an IEP for the next few years, so for now we don't need to worry. Sumner is proof positive that a child can have sensory processing disorder and not be autistic. As for attention issues, she saw them, but is hesitant to diagnose ADHD at this age. We'll revisit it down the line if need be.

In some ways I was surprised, in others not. I felt in my heart Summy is not autistic. It would have been easy to get an Aspergers dignosis because it would have made the school-side easy. But in other ways I am deeply thankful that we can truly know what exactly is going on with him to better tailor therapy.

Summy has autistic-like traits. The psychologist said that they come out when he is sensory overwhelmed. We will continue to try to make sure his sensory needs are met at school so that he can learn and thrive.

5 Year check up

Today was also the 5 year appointment for Sumner and Jackson. I was dreading it because now that they are 5, they pretty much know that this appointment involved shots. Sumner spent most of the morning trying to rationalize why he didn't need shots, ("how about instead of 4, zero!") and flat throwing his brother under the bus. ("How about none for me, just Jackson!")

It wasn't pretty...the shot part. It took both of us to restrain them. Sumner went first, and we held him down, shaking and sobbing. Sumner once removed a syringe from his leg mid-shot and has a huge scar to show for it, so we pretty much have to hold him down for fear of him doing it again. After he went (they made Truman go first) Jack climbed up, seemingly subdued. Unfortunately he had more trouble than Sumner and even bit me while I was holding him. (Totally out of character and I believe unintentional.)

Thank God the next round isn't until age 11.

Jack was also diagnosed with dysfunctional voiding. He's been having increasing accidents over the last 6 months or so, mostly bladder, and mostly when he is napping. (He still naps 2 hours every day.) Because of this, we have to start him on daily Miralax, like his brother, and remind him to pee every hour. Heavens. That is a lot.

The pediatrician also diagnosed him with Dyspraxia/Developmental Coordination Disorder. We're still actively pursing a psych eval for both kids, but in the meantime I feel like we might have a step toward understanding some of Jack's motor issues. His OT completed a BOT for him and the results were somewhat shocking in how poorly he did. The pediatrician would like him to go to a neurologist as well.

Sometimes I feel like I am swimming in alphabet soup. I keep telling myself to remember that the boys are healthy, happy kids. Well, except for when they are getting shots.

not what I imagined

The meeting was...interesting. Not what I imagined, but it was decided that both boys will be re-evaluated. This is the first step in the direction of them having some plan for next year, our only fear is what kind of plan will that be? There was a lot of discussion of a 504 plan versus an IEP and after reading more about that, I feel very worried. I felt like we went into the meeting with them having decided what the outcome would be already, before the boys are even evaluated, which I don't like.

I had to take Truman in to the pedi yesterday because he had been congested for a few days. While I was in, I set up a meeting with her, and she also referred us to go get a full workup/evaluation on the boys by a psychologist. With a lot of things being thrown around about attention issues, and with Jack's recent outbursts/violent tantrums, we need to get to the bottom of what EXACTLY is going on with both of them. We know they have sensory processing disorder, and Sumner has been diagnosed with generalized anxiety, but we were reminded in the meeting that in the prior evaluation, Sumner came back as PDD-NOS in the district testing, and with all of Jack's fine motor and coordination issues, we want to make sure we are seeing the whole picture.

So, in all honesty, the last 24 hours have been totally overwhelming and frustrating. I would be lying if I didn't tell you that I feel somewhat responsible (even though I know it is ridiculous to feel that way) every time we talk about what is going on with S+J. I wonder how much of what is going on is from their prematurity. I was also pretty angry because I want what is best for them educationally and I want to be heard as a parent. I am hoping that as we undertake the evaluation process, that their needs are truly seen and that they won't be discounted just because they are cognitively so ahead.

As for Truman, he had gained a pound in just over two weeks! At the appointment, he was 8 lbs 10.5 oz!

Ha! There went that theory!

The boys had their home visit this morning for the first portion of their preschool assessment. It went really well, and wore us all out thoroughly. We won't know much until they finish all the testing, which we found out might be more extensive than we thought. They'll have a play-based assessment, and possibly a speech assessment now as well.

Jack's having trouble with a bad ear infection that has been draining for over a week. It's pushed his tube out and now I have to call the ENT to see what the next step is as the ear drops aren't working.

Tonight we went to a birthday party at Chuck E Cheese. As thought, Summy had a few complete meltdowns but eventually made it through and seemed to enjoy himself. He really liked sitting in the rides and not making them move...gotta love our little SPD kid! He managed to eat 2 slices of pizza and sing happy birthday through it all though!

I promise to return to the blogging world in full force after the last week of school/holiday mountain of work/gearing up for a student teacher/life thing evens out here in a day or so!

NYT Article and Physical Therapy Evaluation

Mel over at stirrup queens blogged about a lovely article that really hit home with me, and so I thought I'd share it. Since we haven't heard from Stacy in a while, perhaps some of you with preemies and who work with preemies can chime in on this one.

Here's the article: For Parents on NICU, Trauma may last. One of my favorite quotes?

"Experts say parents of NICU infants experience multiple traumas, beginning with the early delivery, which is often unexpected."

The article discusses the issues parents face after leaving the NICU, including PTSD, and dispels the belief that the amount of time your child(ren) spend in the NICU correlates with the amount of trauma you suffer from the experience. Rather, your coping style partially plays a role in possible after-effects. It also states that men are more likely to suffer PTSD after the NICU than women.

Many of you know my own personal struggle with PTSD, and I started seeing a therapist that specializes in EMDR last winter to deal with my anxiety and flashbacks related to the NICU experience, and trauma of my birth experience. I am sorry to admit that with the move and diagnosis of the boys, I let my own treatment fall to the wayside. (I know, big shocker, right?!?) This article really made me realize I need to make healing a bigger priority, especially if we want to eventually try for #3.

What are your thoughts about this article. Did you suffer PTSD from your delivery or child(ren's) NICU experience? What about your significant other?

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The boys had a PT eval and the shoe inserts are on order. Summy was 2 standard deviations below on the locomotor portion of the Peabody, with 1.4 overall, and Jack 1.3 overall. We'll start weekly therapy next week and so each boy will see her once every two weeks, working up to once a week as they get adjusted to her. Saturday they start their "music and art" therapy class that meets every Saturday morning. And a week from Thursday we get to go back to the sensory gyn once a week for "muscles and messes" class.

I am so sorry it's been so long since I posted a picture. I promise to try and work on it more this weekend! School's got me hoppin!

Diagnosis

After our meeting today we planned out the therapy the boys will begin tomorrow. They have both been officially diagnosed with Sensory Processing Disorder, I'll let wikipedia say it best:

Sensory Integration Dysfunction (SID, also called sensory processing disorder) is a neurological disorder causing difficulties with processing information from the five senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SID, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SID; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion.

SID is its own diagnosis, but it can be linked to other neurological conditions, including autism spectrum disorders, attention deficit disorder, dyslexia, Developmental Dyspraxia, Tourette syndrome, multiple sclerosis, and speech delays, among many others. The meaning of SID falls under the DSM-IV criteria for Asperger syndrome. [1]. There is no known cure; however, there are many treatments available.

Diagnosis is increasing by developmental pediatricians, pediatric neurologists, and child psychologists. While it is not included in the American Psychiatric Association's Diagnostic and Statistical Manual as a discrete diagnosis, Regulatory-Sensory Processing Disorder is an accepted diagnosis in Stanley Greenspan’s Diagnostic Manual for Infancy and Early Childhood and the Zero to Three’s Diagnostic Classification.

Sumner is a classic avoider and Jack is a combination seeker and avoider. We begin groundbreaking research by a local practice tomorrow that will give the boys a new therapy delivery system of bursts of intensive therapy, followed by lulls. The belief is that with the intensive delivery of therapy, they won't need a "booster shot" for a long while.

I am a whirl of emotions. It breaks my heart to see Summy alone, lying on the floor playing with his truck, or scared to swing or slide, or pacing a "loop" to calm himself. I was so scared he was on the autism spectrum. While this diagnosis is like a huge light going on, it's also a scary thought: SPD is not yet "officially" recognized as a diagnosis for insurance purposes. (Go HERE to sign the petition!)

And then there's Jack. Our little Jack who has flown under the radar since we got his feeding issues "under control." I watch him fall a million times a day, get hurt over and over, and not be able to stop himself, or really even have the fear of the jeopardy he puts himself into. My heart breaks again.

I cannot wait to see my boys on the other side. We will evaluate after the therapy burst for the other issues going on which will wait to be addressed (gross and fine motor delays, and speech delays for Jack) All I can tell you is that after the week of evaluations, during our time especially spent with "Cake" as the boys lovingly call her, Summy went down the slide for the first time ever. He shook, and looped, and did all his calming behaviors, but by golly he did it.

A weight lifted, a weight added, but such is the life of a parent.

We also found a (used) swingset for the boys tonight. We hope to move it in the next week or two.

Evaluation Update #2

I don't want to get into too much detail until we know for sure, but the boys went through round 2 of evaluations on Wednesday. We're hoping for a big meeting Monday to discuss the results of possibly both sets of evaluations, which we are still waiting on. We might begin a new program as soon as next week. We're really excited and have seen some real progress, even in the last week. The best news is that they don't think Summy is on the autism spectrum. I cried the whole way home from the evaluation on Wednesday, I was so happy.

As soon as we know more, I'll let you know!

Today is also David and I's fifth wedding anniversary. It's so hard to believe how much our lives have changed in amazing ways in the last 5 years. I am so lucky to be married to someone who always supports me, through and through.