Getting it out...a new diagnosis, full disclosure

I wrote the following to my specialparent.org friends on December 10th, 2007 upon returning from the neuropsychological evaluation at the hospital. I have learned more since then and even have different thoughts/feeings now but I wanted to let you know how I was feeling in the moment.

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December 10th, 2007

We just returned from the neuro-psych eval and I am a little overwhelmed.

Jack didn't cooperate for much of the testing but did well with certain activities. The primary way of getting information was through parental interview. The Dr. was fabulous. I immediately knew she was listening and completely and totally validated my concerns and LISTENED. We were with her for about two hours and then we took a break while she calculated the test results. She did the WPPSI - 3 and the EIDP language tests. She also went through a lot of "check lists" about behavior (not cognitive based)...

Her findings were PDD-NOS -- on the autism spectrum. When we went through the checklist item by item after she mentioned PDD it clicked. It's like the list should have been called "Jack's List" instead of the Checklist for Autism in Young Children.

I can't possibly type the whole list, but I will briefly type which ones Jack displays...

Problems with Social Interaction:
Socially indiscriminate behavior (touching people, looking for tattoos on everyone -- even if he doesn't know them well, playing with classmates belts, hair and getting right up into strangers' faces).

Perservation:
Narrow or unusual range of interests and play behaviors, obsessive preoccupations, attachment to and holding particular objects (he always has a brush in his hand, could play endlessly with the string to our vertical blinds), among other things.

Stereotyped and repetitive play (opening and closing, etc) -- he opens and closes things over and over, has a lot of other things he could do over and over again.

Upset with change/transitions (absolutely)

Somatosensory Disturbance:
Unresponsive at times to verbal input (just stares off, not seizure related, even when I KNOW he KNOWS what I said.)

Hypersensitivity to some sounds (vacuum, lawnmower, etc.)

Distress with crowds and commotion (tunes out and doesn't look/act like himself)

Fascination with visual stimuli (he likes fans, lights, etc.)

High tolerance for pain (probably a preemie thing) but he can fall and not shed a tear.

Sleep disturbance (finally better, but only recently)

Feeding disorder (again, cp/preemie thing)

Atypical Developmental Pattern:
Expressive language disorder -- limited speech, limited reciprocal conversational speech (he expresses his needs but doesn't hold a conversation, he is unable to answer yes or no questions, only uses no as a refusal.)

Atypical vocalizations (screeches with delight, etc.)

Splinter skills -- (he's advanced with his rote memory, very mechanically inclined but delayed severely in other areas.)


Mood Disturbance:
Tantrums, aggression, self-injurious behavior, upset by performance demands (no explaining needed)

Mood changes suddenly

Difficulty expressing emotions

Problems with Attention and Safety:
Selective attention, situational over-activity (hyper-focused on things interesting to him -- totally tunes out and is inattentive other times)

Limited safety awareness

Like I said, this is just a small description of the items checked off -- but enough to know it truly affects all areas of development.

She explained how she has a niece very similar to Jack (2 lbs at birth, bilateral brain bleeds, cp, triplegia, delayed developmentally) and how even though they are very similar in their cognitive and physical skill set, she does not have the behavior symptoms Jack has. I was very confused at first how these symptoms were different than neurological damage or developmental delays. When she explained how you can be delayed and still not have the behavioral issues Jack is having.

We talked about Jack's developmental delays and she gave me Jack's IQ score. He falls in the Mild Mental Retardation category with an IQ of 60. She said in the early years of school he should do well because of his rote memory skills -- but in later grades when teaching and learning relies more on conceptual information he may have trouble. I am not surprised, but I never really ever wanted anyone to tell me this. He has strengths and I know that -- he has areas in which he is very delayed and I know that as well. This is the ugliest and hardest label to come to terms with. I don't know why, it just is.

She is going to help us set up ABA therapy for (hopefully) 20 hours a week at school and the remainder at home. I know very little about this, but from what she told me it sounds like a really, really good situation for Jack.

I am sure I am leaving out a ton of information but I had to get some of this out before I forgot. I am not posting on Jack's blog or really saying anything to family until I can digest this information myself. I told Jason but we didn't get to talk long because he had to work today. I didn't say anything to my mom (she was watching Morgan) -- I just told her we did a lot of tests and we'd have the report in a few days. I know it will be hard on our parents to hear this information. Hell, it's hard on me and I can't be strong for anyone else right now.

Thanks for reading -- if I didn't have you guys I would seriously not know what to do. You've been here through everything -- the NICU, the CP diagnosis, the emergencies, but also the best times -- Jack's first word, his first steps with his walker...I am the mommy I am today because of my friends here. I will never, ever forget that.

Thanks again for everything...love you guys!

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So why now? I feel like if I don't share this part of our world I am not being honest. I also feel ready to answer questions and talk about it -- more so than around the holidays. I am also going through a tough time setting up wraparound services (TSS support, ABA therapy, etc.) and getting everything I feel he will need in order to present at his IEP meeting next week. There are decisions about elementary school that are so BIG I am not even sure how to wrap my mind around it...

There are tough decisions to make and I need YOU as my ever trustworthy sounding board! So there...that's the past few months in just one post.