MRI & EEG results are in

MRI is normal. EEG is abnormal. Nothing physically wrong, but neurologically, his right temporal lobe has periods of lower functioning. She said the 'slowing' w/o physical evidence of damage [via MRI] shows her that he basically is at a higher risk of seizure, but no guarantee & it more likely just paints a picture of what we already know. Some of the difficulties of Rt temporal lobe dysfunction would include: 1) disturbance of auditory sensation and perception, 2) disturbance of selective attention of auditory and visual input, 3) disorders of visual perception, 4) impaired organization and categorization of verbal material, 5) disturbance of language comprehension, 6) impaired long-term memory, 7) altered personality and affective behavior

Hey. That fits.

I really loved the neuro. She explained everything in plain language. Did a thorough exam, and took time for us to explain 2 situations in which we felt he really may have had a seizure. She agreed they concerned her, but since she doesn't see permanent damage, she won't be interested in a longer (48 hour) EEG unless he has another episode that is concerning including no arousal from physical touch. That all made me feel better.

And, to top the cake with a cherry, she is very interested in further autism research and will keep his 'case' open in the event there are any breakthroughs with research pertaining to genetics, brain studies, etc... She said that if they find out anything groundbreaking in the near future, they likely have all the info they need, and just don't know to look at it. So they would use existing data first.

The last thing she is going to do is get the genetics testing back from that hospital and make sure they did/found what she would have sent out for. Since he had ear tags, they look to see if there was any genetic reason for him to have a mutation.

Sounds thorough to me. She put to rest some of my questions including the possibility of brain damage from birth via vacuum. She said his brain is HEALTHY as it can be and there is no sign of ANY damage of ANY type from fall, bump, etc..

Quick Hit: Clocks

So, round about noon today, I learned something new about my boy.

I'm fairly certain it will explain itself.

DS: "It's 12 o'clock"

Me: "Yes it is, look at this clock, it says 12 o'clock too"

DS: "No. That's 11:58"

Me: "uh...................................You are absolutely right!"

I'll Love you forever, I'll like you for always...

As long as I'm living, my baby you'll be.

I guess you don't really wake up and expect a miracle on a miracle day. The day is going as it usually does and I suppose miracles usually just sneak their way in....

I own the book 'Love You Forever', and it has always held a special place deep down. I think most mama's have a bittersweet taste as they read it, and I imagine most don't read it without a box of tissues handy.

But for me, it holds an even more special meaning. When I pick up my boy and rock him back and forth and back and forth and tell him I love him forever and like him for always..... he really does have to be really asleep.

He is so sweet and shows me in many many ways that he loves me. But, not by holding me. He never has. As my first child, and a baby, I never understood why I couldn't carry him on my hip. If I tried... he'd just hang off. He would never put his arms around my neck or even just grab my shirt or arms. I can even remember the last time I tried to snuggle with him. We used to always lay on the couch, snuggle up and watch ELF when he was tiny. But as soon as he had a little mobility, he would arch away. As he got older, we noticed he yelled when we tried to hug him in bed or tuck him in or especially when silly mama tried to sneak in bed and snuggle. Then, one day we gave him the words he needed, "I want to sleep by myself.' Which was a blessing, even though it stung a little to hear it every time I got close. He knew what he wanted and could express it.

Baby sis has moved back in the room with Big brother. We needed the office space, so coordinating naps has been a challenge. She went for her nap first, Big Brother was reading his books, and I was feverishly working on a new reward chart (stickers for 'good choices', subtract stickers for 'bad choices', and 8 stickers = 15 minutes on PBSKids.org) so I could show it to him and get him working towards 3 stickers if he made the 'good choice' of staying in bed. He seemed excited...

And then....

.... he grabbed my hand, "I want to take a nap, Mommy" and led me to his room.

"Well, ok, you can take a nap... make sure you use your good choice and stay............... "

"can I snuggle?" He grabbed me around the neck with both arms, holding on so tight, like he would fall if I even moved a muscle. "can I snuggle?"

"Yes, sweet boy, I'll snuggle with you"

"ok, mommy"

I layed on the bed in tears as he gripped around my neck and twirled my hair. I tried to pull away at one point, "No, hold me."

I didn't even know he knew to say that....... I continued to lay there as long as he wanted to hold me. After about 10 minutes, he moved to the side - flipped onto his belly, "You lay beside me." ....and then he fell asleep.

My incessant sobbing kept making him jump and Baby Sis reposition in bed, so I thought I'd better leave. But I could've laid there FOREVER.

I KNOW that God is working on me... teaching things through my children day in and day out.

"Those who sow in tears

Shall reap in joy.

He who continually goes forth weeping,

Bearing seed for sowing,

Shall doubtless come again with rejoicing,

Bringing his sheaves with him."

Psalm 126:5-6

Lord... you have my attention.

Thank you for being in control and not me.

Thank you for the hard places....

I hurt at times

But You always show me

why it's so silly to

be sad over the creation

you have placed in my care.

The deepest things I have ever felt

YOU have shown me.

Thank you that no one else can take

credit for the miracles You perform.

My HOPE is in you Lord

My STRENGTH is in you Lord

My LIFE is in you Lord.

"F" Words

For a while, Jen (SLP) has been testing the waters with 'F's'. He

has always used a 'Th' sound, and part of the problem might be that he is missing a front tooth, but Jen doesn't seem to think that is the whole problem.

Yesterday she asked me for a mirror after witnessing the F's not getting any better. She sat right behind him and just had him bite at his lip over and over, like she was doing, all while watching in the mirror.

A few misses and then BINGO!!!

'Ffffarmer, Ffffarmer, Farmer!'

We congratulated, worked a few more minutes and then moved on.

She said that sometimes you just have to wait until they're ready. She was right.

So, today, I was celebrating for him as he figured out other 'F' words to say correctly.

If you've ever watched So You Think You Can Dance, you'll get my reference.

"Ffffoot"

"Good Job! High Fives!! You're on the Hot Tamale Train!! WOOWOO WOOWOOO!!"

And, the rest of my day has been like this:

"Foot, Feet, Flower, Fireman, Farmer, Farm.... WOOWOOO WOOOWOOOOO....Hot Tamale Train!"

Good Week!

Two firsts at dinner.....

I don't know why I held back my tears when it happened.... I guess so I could be strong for my boy. But, I am NOT holding them back as I write this.

Our first week of school is over. DS hasn't been eating well at school [they serve breakfast], I can tell because he is hungry enough to tell me when he gets to the car. Tonight at dinner we had a host of favorites; Chicken Nuggets, Green Beans, Potatoes, Mac n Cheese. Both kids were happily digging in, when baby sis decided to start playing with her milk.

As usual, playtime ensued. She shook her cup back and forth, and he did too. However, his is an open top cup. 'Uh-Oh!' says mommy when it spilled. And the tears started to flow. He was so upset. His little lip was quivering, he was heart broken.

In the midst of sobbing, he managed to get out, "I'm... sorry ....for ...spilling... milk Daddy....'

What did he just say? What did he just fully understand? What?! What!! WHAT??????

Dad and I looked at each other in amazement and felt so sorry for him because it was SUCH a sweet first for us, but it was just an accident and he felt so bad he could barely get the words out.

Then, "Can... I ....help clean up ....milk?"

What did he just ask? What did he just fully understand? What?! What!! WHAT??????

Sweet sweet firsts. Sweet sweet understanding. I am amazed beyond words tonight.

Funny Things...

As a Stay-at-home-mom, I become complacent to see hilarious things happen around me all day long that just seem normal.

I've never thought about DS's little morning routine until THIS morning.

DS gets up. Earlier than usual. Dad and I are sitting having our morning coffee and daily quiet time. The lights go on, the lights go off, and then he sits on the couch.

I never blinked.

Dad, looks at me and laughs, "Did you just see that? He just turned on the lights. It looks like he is sleepwalking."

We both laugh.

Later, I called dad for one reason or another. He was still relishing the morning happenings and asked me if he went off to school ok? I asked him what was different about the way he woke up, and he responded that he looked like he was sleepwalking the way he just came into the room with no greeting, turned the lights on & off, scratched his head, and then sat down.

I laughed a little harder.

"OOOOOOOOOOOOH. That! I wasn't sure why you were concerned. He does that every morning."

"Really?!"

"Yeah. I can be standing in his path and he never even looks at me. He runs out of his room. Flips on his light, hall light, livingroom light, and then sits down. It used to be the TV, but now he just turns on the lights."

We both have an even better laugh. Realizing that we just get to see things that other parents don't. And we enjoy that.

The EEG Results

I really didn't expect to get ANY results from the EEG.

I expected it to be one of those phone calls like I've had so many times, "Is this mom? The results are normal at this time." But,When you hear the Doctor is on the other end of the phone, you know that's not what they're going to tell you.

~Abnormality in Right Temporal Lobe

~Slowing for brief periods of time on & off

~No active seizure activity within duration of the test, but there is an elevated risk

Doc also mentioned that it could be something as simple as a cyst, but an MRI would possibly show lesions if they are present.

She basically said that he has an elevated risk now, and even if the MRI does not show any additional information, he will be monitored from here on out.

The Developmental Pedi does not read the EEG, we will have to schedule an appointment with the Neurologist who wrote the report to discuss the results in more detail. We will have a Head/Brain MRI this Wednesday to follow up on his head trauma at birth, and now to follow up on his EEG results as well.

My Google search found quite a few things supporting 'Right Temporal Lobe Abnormalities' as being associated with Autism. It was quite interesting to read that it contributes the sensory system, language development, and aggression.... however I don't really want to know TOO much. Only HIS brain is going to tell us what we need to know.

Any experiences out there??? Questions I should have ready for the Neurologist/MRI??

Holding fast to the knowledge that God is the one who created this little miraculous boy.... He knows what his purpose is and I am actively searching for what HE wants me to learn. One is certainly WORRY does me no good.

Talking... er.... Reading the PHONE....

I cannot bypass posting this one ;)

We use reading/spelling/numbers as rewards around here all the time. Ask me how to get my 18 month old to do something & I have NO IDEA --- but DS will do almost anything for stated rewards.

I was talking to his Memaw on the phone last night. I tried to get him to talk and he directly told me, 'No'.

A few minutes later, he came back. 'My turn.'

'Ok, talk to Memaw, but no numbers'

As he put the phone up to his ear, he was looking as hard as he could out through his peripheral vision to see those numbers as it went past his face. He couldn't stand it after about 2 seconds and, before even saying hello, had the phone back down and started reading it.

We went through a series of giggles as he TRIED to read and I redirected. Finally I said, 'enough, no you can't talk if you're going to read it, all done'.

He left for a few minutes.

'My turn', again.

'Ok. You can talk, but NO numbers. You could say.... hello. how are you? what are you doing? I love you. Bye Bye. But NO looking at numbers.'

He got a sneaky grin on his face, 'OK!'

"hellohowareyouwhatareyoudoingIloveyouByeBye....... '

*looking at numbers*

Memaw and I could not contain our laughter for nearly 5 minutes. OH MY! Well, he DID say everything I suggested. The reward system is working SO WELL. HA!!

Urinal Update

Who knew I'd ever have 2 posts about a urinal... ha!

Well, all my hopes and dreams were crushed tonight. Not really, but teacher #1 and I were rehashing how hilarious last night's bathroom festivities were and I found out that she wasn't talking about the URINAL.... she was just talking about him standing at the potty. No bother, he's never done that at home either.

She reenacted [at dinner] in full how much too TALL he was to go pee-pee standing on the stool. And how much too short he was to go standing on the floor. Let me just tell you - watching a 30 something lady reenact a boy potty scene AT DINNER was enough to put me over the edge.

Anyway, tonight, teacher #2 took him potty. Of course, he told them YES he needed to go (this is almost always his answer). I am picturing his pants and diaper in the floor of the bathroom - thrown wherever they came off. Complete with naked bottom, Teacher #2 is helping & he doesn't REALLY have to pee. So, she says that he is holding the little thing, "Come on pee pee, Come on pee pee, Come on pee pee" because it is just not acceptable to GO to the bathroom and NOT pee. She said that finally he dribbled a TINY bit and then reached towards the water to touch it before she stopped him.

Ahh.... I guess my potty stories are JUST beginning. I do, however, think that if there are other kids going potty at his school, he's going to pick this up QUICK!

I got to watch him get in line from the playground and walk in so good. He got out of line a couple times, but listened very attentively when teacher #1 told them to get back in line.

VBS night 2 - went well! Theme: Urine....er....I mean.... The life of Peter

Good times!!

The Urinal

Last night was DS's first night in 'big boy' VBS. I was SO busy with setup, etc... I didn't have time to remember to freak out (I know that was from you, Lord, thank you!). Prior to this week (seemingly the busiest I've had in 3 years) I was quite concerned about transitions and how DS would do moving from class to class with his peers. I had planned to talk to one of his teachers to make sure they knew to keep a close eye and maybe discuss a couple key issues. I never did that. I still hesitate on that. I want him to have the opportunity to reach ANY potential possible, and I'm so afraid that someone who does not understand 'the label' will treat him differently. It is just ONE week. Not a whole school year.

So, I settled on asking a couple of the teachers how he did and testing waters on whether I needed to step in at the end of the night.

Our night began: All the kids get a sticker for identification. I wrote 'diaper' on his so they'd know that he is not potty trained [because for whatever reason I figured all the other 3 year olds would be, but it's a young class and not all of them are]. I am a 'guide' for the 4 year olds, so I was right there as we all gathered in the big room. DS Teacher #1 came over and asked me about the 'diaper' note and I stated above. She asked if he needed to go potty at all that night, and I stated that he is not actively training and he is welcome to go, but will need a lot of help.

Low and behold if that boy didn't GO with everyone else, walk in, take off his pants, pee IN THE URINAL with a 'couple of dribbles', somehow get his pants back on (maybe help??), and went back to class. Hey now, I was supposed to be there for his first URINAL experience....

My BIG BOY did so good. Of course, the FIRST time they thought he went to the potty, he was just there for moral support watching another boy and then clapping in congrats that he went pee-pee. I wonder what that poor kid thought. LOL Bet he's not used to an audience.

Other than that, the only comment I got from a teacher was that he purposely threw his napkin on the floor at one point. I don't know what that was about, but I'll take it.

Night #1. Success.

Now, let's see how much night 2 changes & how he does with that. Worried mommy has higher hopes for tonight.

The art of Storytelling....

I had the sweetest evening with my little boy.

We had another hard/long day yesterday. We spent an hour at a well visit for Baby sis (everything is good, & just one shot), then we headed to spend 5 hours at church working on props for VBS. Both kids really enjoyed themselves, but DS would not nap. He got really wound up and by the time we were home, he was just off the wall, talking gibberish, and not listening.

I knew that this was in part from the long day, in part still recovering from two long weekends, and in part from our routine being flipped upside-down.

I got baby sis in bed, and then headed to work on him. He was NOT having it!!! I left him to get his PJ's and instead of getting 'Pajama shirt and pants', he brought me 4 regular shirts. Then, when I walked in his room, I found the entire contents of BOTH drawers and the cabinet on the floor. UGH!

So, I took him to the livingroom and we wrote out some social stories about our day. I would write most of the sentance, "Today was fun. First, mommy fixed _ _ _ _ _ _ _ _ _" and then leave the rest as a fill in the blank for him. He thoroughly enjoyed going back over our day this way, but he wasn't winding down.

Then, he sat on my lap and layed his head on my chest (like he NEVER does). I said, "Why don't you let Mommy just tell you stories tonight instead of reading". I proceeded to tell him what I could remember of stories like The Three Little Bears, and Rumplestilskin (because i thought he would like the silly name, and then I remembered what a horrible story it is, so I left out big parts). He was laying so still and he was SO intently listening, I just kept telling him one after another. Finally, I started asking him questions. He actually processed parts of these stories with NO book & rattled answers back off to me with precision.

Then, I said, "Would you like to tell Mommy a story? Maybe a story about a fish"

And he said, "Once upon a time, there was a fish. Fish was swimming in water. The End."

And I responded, "How about a story about a Farmer and his animals"

And he said, "Noah and Ark. Animals in the boat. The End."

And I said, "What about Jonah and the Whale? Can you tell Mommy that story?"

And he said, "Whale swimming in the water. The End."

I think I would have sat there until midnight going back and forth if Dad hadn't walked in.

It was so sweet. He sat still. He layed his head on my chest. It was just a regular little conversation. I'm telling you, I needed that this week. He is so awesome.

Thank you God for victories like this. I KNOW that you allow us to walk through the fire sometimes so we can see what is on the other side and KNOW that YOU have provided it for us.

Joy, Trials, Patience, Wisdom.....

I began my day today reading James 1:1-5

I KNOW that when I am obedient to read HIS word, it will be used. Most of the time, it relates to someone else; an encouraging word, a conversation, etc... but when I read about Joy in the midst of Trials.... I should ALWAYS know that it is going to be a day testing of my faith.

We went to church this morning to work on some props for VBS. There were several other kids there. Pretty much we had the hall to ourselves; the kids had a TV, lots of toys, and space to roam. I thought to myself, "Here's the perfect opportunity to give DS a little social interaction."

Everyone always tells me how great he does with other kids. But all I saw was him sitting in a corner reading. Then, he ran up and down the halls. Then, he played with the doors on all the car toys, then he swung a hockey stick around the room with no awareness of the other kids. He never interacted. Not once. The other 6 kids had toys thrown from here to yonder & he MIGHT have put his hands on 3. To boot, he wouldn't listen to ME either. He's been better about that.

Then, he was with the babysitter (and sis) for a few hours while I went to the dentist. He was pretty good for that, other than a diaper change outburst (which ended up being a problem because he wanted to go potty - but he already WENT in his diaper, so he couldn't and he doesn't do well when he already has something in his head).

As soon as I got home, we had to eat. He has refused breakfast today. Only ate Peanut Butter for lunch, and basically refused dinner too.

Then we left for a meeting (which I knew I should have kept the kids home for instead of going, but we went anyway). Baby sis ran like a crazed animal for 2 hours & DS just sat there. 1 hour with the Study Bible. 5 min's, again with the doors on toys. A little running/circle time. Then, the rest of probably 40 minutes played with a calculator.

Am I just noticing it more? Are we just in more circumstances where I see it? Is he just getting older and I'm seeing the delays more? Is he having a hard week?

Yeah. Hard Day. Everyone has them. I know.

God.... today..... I will need YOUR wisdom to perfect that JOY in my heart. I am imperfect. My first reaction is to cower into a ball of tears. But I know that YOU know the bigger picture, what YOU created him for, that he will be just fine. That he is your child. I just need YOUR wisdom to comfort me in that tonight.

IEP Goals in more detail

GOALS: (i will list one from each category, since there are well over 25 total) They explained to me that goals can be academic or functional. All of DS are functional.

SelfCare/Safety: Request somethign to eat or drink during mealtimes and/or at other appropriate times, at least 2-3 times across each week of services. (other goals about toileting, washing, and safety)

Emotional (Regulation): Choose from two acceptable options for responding to an identified emotion a) when choices are presented visually by an adult b) by using a visual choice system on his own, for at least 3 of 5 situations when his emotional state is limiting or preventing him from engaging in activities. (other goals about identifying emotions, redirection)

Social: Verbally initiate a social interaction with a) an adult b) a peer, during at least 1 of 3 informal group situations (i.e. snack or mealtime, play session, recess, etc.) (other goals about following directions, turn taking, participation in cooperative play, response to frustration, attention)

Play/Independance: Maintain engagement with an adult-directed hands-on acticity (craft, construction, game, etc.) for a) 5 minutes b) 10 minutes or until complete, with no more than two individual redirections, for at least 3 of 5 opportunities. (other goals about following directions, choices, transitions, problem solving, redirection)

Language: Answer fact-based "wh" and "yes/no" questions regarding a)current activities adn routines b) information requiring recall for at least 4 of 5 consecutive opportunities across settings. (other goals about pronoun reversal, using verbs, maintaining conversation, following directions)

IEP Results:

The meeting went very well, actually much better than expected.

The 17 page report that describes a well rounded picture of my boy was read off to me in brief. Multiple areas were described as being noted during the 3rd observation - which made me feel really good I pushed for it. A couple items I was NOT aware of that were reported were his IQ (DAS II), which tested at 132; and his Visual-Perceptual skills which tested above what any of this team had ever seen. [This is a test with a series of blocks that are used to create structures matched and then remembered, as well as being timed. He never missed one] The Ceiling for the test is 90 & he scored 90. However, this was another great picture of his 'skatter' of skills as he did not test THAT well on the other parts [though they were all between average and very high somewhere].

Alot of paperwork later.... he was determined eligible through the Autism Spectrum Disiblity Eligibility requirements.

~~~side note~~~

Last Tuesday when the Psychologist was at our house, she told me that he was not impaired enough to qualify under ASD, they were having a hard time qualifying him under DD and began giving me other options for settings where he could benefit from time with typical peers. She also told me that he would not benefit from one of their settings because all of the children have IEP's. This whole process goes to show that NOTES and REPORTS and PHONE CONVERSATIONS with current THERAPISTS, as well as GOOD observations across professions are VITAL to this process!

I took a deep breath as I read the paragraph that detailed his eligibility & support diagnosis of Autism. I KNOW it, but it always hits a little hard when it's in black ink.

On to determine GOALS. The general categories that were either proposed or suggested by the team (including myself) were all functional goals:

Self Care/Safety

Regulation (Body/Emotions)

Peer Social

Independant Social

Pragmatic Language

He also has a blanket OT service that has no time limit to incorporate sensory into the entire plan. She can come everyday or once a month, depending on his needs.

SLP is stated as 4x/30 min for each reporting period (approx. 9 weeks)

The placement is for a Part Day, Developmental Delay classroom. All the children have IEP's, but there are varying issues. The instructor is trained in Birth-5, but usually has added training & I was told that if they are not fully trained on the issues that are presented in their classroom - they receive specialized training [in theory]. The actual SCHOOL placement will happen within the next two weeks. They are looking at a school that is not the closest school to our house, but has a teacher with more experience in ASD. We won't know if we will get year round or traditional until then either.

I am very pleased with this placement. I feel that other kids will have something to offer him, he will have things to offer them - but it will be a less threatening environment with a little more support and less kids.

How in the WORLD do teachers keep up with all these goals? Hats off to the successful ones!!

NOW I have to actually LET GO and let him GO to this preschool.

It's Monday (aka. IEP Day)

Prayerfully walking through today..... walk with me!

God knew I needed a little tidbit to calm my spirit this weekend. Jen spoke with their SLP on Friday. She sent me a message to tell me they talked, and it looked like we would be getting a class based assignment. I needed that!

Thank you Lord for being our creator, the all knowing, and everywhere all the time! You know what my inner most faults are, my inner most needs are, my thoughts, my feelings.... Please be with me today....

Update later...

Observation Day Part 3

Today the SLP (Liz) and Special Ed. teacher (Jeff) came for my requested observation. It was MUCH lower stress than Wendy's observation and in my opinion, they saw a LOT of stuff they needed to see.

Jeff did the play. Liz did the notes.

He knew all the right questions to ask and the right way to go about all their interactions to get the desired responses. When Liz wanted him to do something specific to address a specific concern, she would let him engage. DS can't mask his pronoun reversals, echolalia, delayed choices, deflecting coping mechanisms, labeling, and rigidity. I am very pleased that they came to observe because now it's not just ME saying it - they saw it with their own two eyes. It was actually QUITE a different experience with these two. They seem to understand HFA a bit more than Wendy b/c they picked up on real subtle things that I felt I had to show to the other lady OR she would pass them off as typical.

In the end Jeff said we would work hard as a team to figure out what would help him best to get him up to speed with other kids 'well before it's time to enter school'. Sounds promising. I think I can de-stress and relax a little now.

Here's one mama who is ready for Monday (the IEP) to come and go. At that point, we will have a plan in place. We will continue with SLP and OT during the summer. We have goals all worked out with the both of them. And we can return to somewhat normal life.

Lord, thank you for some rest and peace. You know this is what I have been asking for! I am thankful for harder times like these because I get to see you more fully. Your rest, your peace, your kind of JOY and wisdom are all I really need. Forgive me for getting so worked up!

"we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, HOPE."

romans 5:3-4

Observation Day Part 2

50% Old Wise Cynic: CONFIRMED.

As I wrote in the previous post, the School Psychologist (Wendy) was planning to re-visit to observe DS in his natural setting. They usually prefer to see them in a school/daycare setting around other kids, but we don't have that -so- home with sis was the winner.

I planned for her to come while Suzanne was here. I knew Suzanne would be readily available if DS was having one of his unusually calm days - to display a behavior or two. When he has to work really hard for her, it gets him all riled up. As I said before, he had displayed exactly ZERO behaviors for them at the eval.

I took a couple things away from that experience:

1. I was pretty certain Wendy was quite skeptical that DS even has issues that need to be addressed. He thrived, aced their standardized test (which he broke - really - not ACED), and didn't have any trouble at all. I expected that. However, professionals should realize how subtle some of this stuff is & the fact that many like DS fly under the radar until they hit 1st or 2nd grade only adds to my confirmation of that!

2. I became concerned about the SLP's (Liz) comments and body language; stating that 'she had seen everything she needed to see' and didn't need to observe him at home.

3. Overall UN-impression with the OT who continued to have no contact regarding trying to at least sit-in on one of our OT sessions, since she was unable to spend more than 20 minutes at the eval.

So, prior to this Home Observation, I emailed Sally. In a very non confrontational -yet- direct way, I let her know all of these things. She got to work - got the OT back on her feet to at least call and talk to our OT, which I felt was important because no-ones notes are ever going to be so exhaustive that they explain every detail. I guess the benefit is that if she gives me much trouble at the IEP, I will not hesitate to remind her how much time she actually spent with my little one.

She got another observation set up where Jeff and Liz will be coming to the house [this morning]. However, I also got a phone call from Liz who was upset that I 'felt like she didn't care' which I never said. OOPS!!! I really really spent a lot of time on that email so that no one would come away from it feeling like I was being overly critical of a process I know little about. The one line I could NOT leave out, though, was probably the kicker, "I would like to make it clear that it will be unacceptable to me if he is denied speech help without any outside observation." I've been warned not to be too defensive & go in acting like they are out to get us ---- but I also have to look at this process and make sure they are getting everything THEY need to make an informed decision. I guess I could have just requested an observation, but I felt this was more effective. If nothing else, it worked.

Wendy came on Tuesday.

She was here earlier than Suzanne, so we had some time before the session. DS was his usual self in play. I set up the living room so there weren't any toys out to begin with. They were all around the perimeter. I asked him quite a few questions to try to coax him to GET a toy and PLAY for her like she came to see. (noted: didn't initiate play independently or jointly with sis; typical for him) I finally picked blocks. He made a 'boat' and a 'house', which are very scripted items. I also tried to get him to make a nondescript item like I did and he copied it exactly. I encouraged him to no end to make something different. Nope.

After a while of him Persevating on her Laptop instead of playing with anyone, I told her that the real picture of his play would be if we backed off and tried to talk. He always gets REALLY upset if any therapist and I try to talk. Of course, this Wendy was new, so he wasn't all that upset about it. But, he did use some atypical behaviors to get her attention back (noted: grunted and got in her personal space to get attention).

Before we left him alone, he wrote in the air, jargoned quite a bit, and also did this really funny thing where he stood at the couch and 'journaled' while making funny mouth noises and talking under his breath. (noted: that was weird)

We headed out of the room. When we backed off, she proceeded to tell me about other options (other than preschool) where we could foster involvement with typical peers. She said to me that nothing seems to be the right fit for him and they are trying their hardest to figure out what he needs, but he is not impaired enough to be put in a class with all children with IEP's. I asked her about the mainstream programs & she stammered around and said that they were really programs that children who need FULL DAY support are usually placed in.

[At this point, I am appalled that she has admitted they have NOT had any sort of group meeting to discuss the other professionals findings/observations, YET she has already made up her mind and has decided he doesn't qualify. Steaming!!!]

THEN. She lit into this story about the 3 boys she nannies. Basically they are really smart. And they don't have good play skills. And then she says "and THEY by no means have Autism". [thinking to myself what the purpose of this story is... conclusion... comparison to DS's genius and play skills, which were the only observations so far.]

I made it VERY clear and precise for her that certainly any child with that profile has ONE piece of that 'autism' puzzle, and while QUIRKY nonetheless, does not have autism. It isn't until you ADD 1 + 1 + 1 + 1 together that you have ALL the pieces and a child actually DOES have Autism. And she says, "To tell you the truth, I have yet to see that sensory piece at all".

I laid it out for her: THIS is where you need to take MY comments as a part of this team and trust the information provided to you via his therapists who have known him for all this time. They all have very detailed notes and are all willing to do anything it takes to get all of you the information you need. Certainly there have been children before who 'test' well. But, his entire EI team are in agreement that while he may 'fly under the radar' at first, is clearly impaired and needs additional support so that when he DOES get to kindergarten he will know how to thrive.

At that moment, Suzanne came.

Long story short [because I'm getting too long winded here], Wendy's eyes bulged out of her head when she finally got to SEE it. I could see her watch in amazement as this Quirky Genius turned into a child with Autism before her very eyes. I really cannot say WHAT she took from the experience of his behaviors - except for 5 pages of typed notes. I asked her as she left if she saw anything new that helps put all those pieces together and I got a definitive, "YES".

TOTAL exhaustion.

I cannot STAND this. Focusing on his impairments is like the worst thing you can ask a parent to do over and over. Yet, because of the way he presents, I have to. It is very clear to everyone on his team, myself, and some others in his life that there is no longer a 'grey-area' for him. I don't have that question anymore, "Is it really autism?" Yet, as all of his team have said to me on multiple occassions - because of the way he presents at first, he is at risk for falling between the cracks. He has an endless list of potential - and I am so thankful for that. Not every parent can say that.... not every parent gets to see this hope so early, so blatant, so quickly. I have that. But I also know that he's going to need some support to get there. Please somebody, help me out here. I can't do it all by myself.

Next observation: 9:30 this morning. SLP and Special Ed. teacher. Now I have to figure out why it is that I made them come.... hmmm... what do THEY need to see? Back to the grind.