6.30.2009

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.

6.29.2009

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...

6.26.2009

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.

6.20.2009

Silly Talk

This week has definitely had it's ups and downs. DS is always there to encourage though! It seems just when I am discouraged and in need of 'pick-me-up' he says the darnedest things!!!
All of the following were spontaneous and FIRSTS!!!
1. Earlier in the week, DS was having a hard night and responded to EVERYTHING we said with 'Beasty-Beasty'. I was growing tired of him not responding to us properly and tried to find out what 'Beasty-Beasty' meant. He wasn't helping at all and was becoming more frustrated by the moment. I ran out of the room...hid...ran back into the room towards DS and as I tagged him yelled 'Beasty-Beasty'!!! He laughed so hard and said 'No, it's not a game' in the most playful and silly voice I've ever heard. We still haven't found out what it means...
2. We have been working SO hard with DS on dressing/undressing. He mastered sliding elastic pants down some time ago. He can get his diaper/pull up off, though I've only ever seen that when he's working for a marshmallow (potty reward). His shirt is the hard part. If I start one arm for him, he can usually at least attempt to get it off on his own. The thing that has been VERY recent is him choosing to do this on his own. We usually have to prompt until we are sick and tired of prompts!
Well, this morning I woke up and heard the TV on. I usually hear the pitter-patter of feet when he jumps out of bed, but not today. I walk into the living room to see clothes littered about and one NAKED jaybird sitting on the couch watching a cartoon. Just for added flavor, if the chain lock hadn't been on the door - it would have been standing wide open as well!
Mommy: Good Job!! Did you take all your clothes off?
DS: Yeah (full blank stare at the TV)
Mommy: Do you need new diaper? Do you need to potty?
DS: No, I want Cartoons
Mommy: You did such a good job taking all your clothes off. You did it all by yourself.
DS: Removes focus on TV "Yeah. (name) did it!"
3. Tonight, Dad put DS to bed. He usually requests a Curious George book-on-tape to listen to as he falls asleep. In fact, it usually lines right up with whatever story he READ to himself in the 15 min's of book time before bed. Recently we have been asking if he wants SILLY stuff to listen to such as, Curious George eats a Popsicle, or Curious George Dances with Mommy.... just to mix things up. He knows that those aren't REAL titles of CG books/movies and laughs. Tonight was as usual with the silliness. Here's how it went....
Daddy: Do you want 'Curious George goes Skydiving?'
DS: No, that's not a Movie. I want 'Curious George Eats a Carrot'
Daddy: That's silly, that's not a movie
DS: Good Job Daddy, Thank you for using your words
****I think we might say 'thank you for using your words' too much!****
4. Anytime I even attempt to lay with DS and SNUGGLE like I've always wanted to do, he gets upset and pushes me away, 'No Mommy, No, No No'. I tried this at naptime a couple days ago and modeled for him 'No Mommy, I want to sleep by myself' & then left him alone.
So, one day Daddy tried to lay down with him. And without any prompting at all he says 'No Daddy, I sleep by myself'. YAY!!! Dad was floored because he had no idea I had taught him to say that ;-) Teeheeeheee

6.15.2009

Observation Day.

Today was the infamous observation day for Preschool Services.
DS was in such a good mood this morning. I took him to McDonald's to get his all time favorite breakfast ---- pancakes! Eh, not the most nutritious of foods, but the smile it put on his face was worth it. I knew he was in for a lot of work in the coming hours.
We arrived in plenty of time to talk about what we were going to do. He was ready and willing to get to work. If my son could have a motto it would be: 'Work is play and Play is work'.
A very cautious Sally (Preschool Coordinator) greeted us and made sure that DS would be ok with some seated tasks, rather than the normal free play observation. I told her that he would certainly prefer that sort of thing and he would transition perfectly fine into that situation.
He proceeded to get into his chair. Observation #1. Got into chair OVER the back and then slid down and squeezed his legs under the table. Did they catch that? I do believe that is about the hardest possible way to get into a chair!
Then come the books. Flip books. Page Numbers. Lots of Pictures. Questions. Lot of Questions. Ace! Ace! Ace! Ace! This is what I expected. He aced the entire first book. I am not exactly sure what tests they were giving him, but it only took them about 10 pages of questions before the jaws started to drop. Whatever age this thing ended at, he pretty much got them all. I think they finally stopped when he got to early division. I admit, I did enjoy this part. Though, I knew it would come at a price. This is where they (professionals) get all googly eyed and lose sight that even though this really bright little kid has some quite amazing skills - he still needs help.
While all the questions were going on, Special Ed Teacher - Jeff, was chatting with me. He asked me how I felt Hyperlexia fit into DS's equation. He asked me to paint him a picture of grocery trips. He asked what DS does with magazines and books. He asked how social situations look with other kids. He looked as if he could not WAIT to jump out of his chair and start to get PLAYING with my kid. I really liked Jeff.
As I was chatting with Jeff, the Speech lady (sorry, you didn't leave enough of an impression for me to remember your name) passed me a 'Pragmatic Language Inventory' and I breathed a sigh of relief. Someone read my notes!!! About 5 seconds into her part of the evaluation she turned to me and asked if I had any concerns about articulation. It was littered with 'I hope she says no' & my answer was no. He used to speak as if he was an English Professor from Cambridge University. His improvement has been more like going from 'Yes' to 'Yeah'. I am pleased with that!
Then came the OT. "My you look familiar, where do I know you from?" Oh no! Are you the same lady who did his initial OT evaluation? Low and behold yes, you are. Good News! She didn't have much time & is going to rely on the recent OT evaluation (PRAISE GOD!!) and come observe during one of our home OT sessions. *second sigh of relief*
She did want to at least see him write and use scissors before she left today and she got to observe the disconnect. She asks "So, he can write with a pristine grasp, but he can't cut with scissors at all?" And there is demonstrated his Motor Planning and Fine motor issues. He really has a hard time even figuring out how to get ANY fingers in the scissors, let alone the right ones. We're working on it.....
Then came playtime with Jeff. At the same time the Psychologist (Sorry, you looked so much like the Speech lady I forgot your name too) did a parent inventory with me. DS started strong with Jeff, following his lead. But quickly he backed off and started using his coping skills. Observation #2. He won't do ANYTHING that comes remotely hard. His agitation was extremely mild compared to that of home --- at home he would have already been up running down the hall and crashing into the mirror.
Psychologist asked me a ton of questions about safety, language, eye contact, communication, etc... She *seemed* to be the most skeptical of the group. She made a noise under her breath when I answered that there was no ADOS or CARS administered (at22 months old) to diagnose his Autism. She littered her speech with 'If's' that made me leave less than confident that she would see the necessity in DS's need for services.
I absolutely LOVE how at the end of the evaluation they ask 'Is there anything that concerns you' as if this is your opportunity to interject a few small statements and leave the rest up to assumption. NO! I was prepared for that. HERE YOU GO! It's the 2 page summary we prepared for you last night so as to not miss this opportunity. Here's a copy for everyone.
Jeff seemed to enjoy this little 'challenge' that entered his evaluation room. He was excited to see the positive skills that they can hone in on and help him improve all the way around. I could tell that he was in agreement with me. He saw it. I hope he'll be the voice the others (if they are as skeptical as they seemed to be) need to hear when they are discussing the NECESSITY of giving this little boy services.
Our evaluation lasted for 2.5 hours. Well over the amount of time I THOUGHT it would take, but they did get to see a lot of stuff during that time. I just pray that the overload on 'cognitive' and preferred skills doesn't skew his results.
I was sent home with two more parent assesments. It took us a little over 2 hours to complete them both, but they are done. I also made phone calls to lock in 3 advocates from his current team at the IEP meeting. I was feeling a little skeptical, so I made sure my 'maybe's' turned into 'Yes's' because I feel like this team was a little hard for me and I will need all the help I can get.
I have to feel so proud of my little boy. He was an absolute angel. I think it could have been important for them to see some of the behaviors that we encounter at home ALL the time, but 2 of them will be coming out to do a home observation. At home, there are very few opportunities that he is not showing at least SOME of the behaviors that tell me he needs more help. I think they'll get to see it. But, I hope it's Jeff that comes and not the Psychologist. They were undecided when I left.
I joked with hubby the other day that I want to take a picture when we get to the IEP meeting. 3 people off his team volunteered to come to the IEP with us. That will make 9 people in on this IEP. They know he falls in a little area that is misunderstood! He is so loved. He has made such an impact on so many people and he doesn't even know it yet.
Before we were done today, I had several comments that showed me how special my little boy is. I got one "Maybe he'll be president one day", and a couple "I don't know what it is he's going to do, but he's going to do something big". I think I'll hold off on all the PRESSURE, but he's already doing big things in my mind.
He's so cool!!
OH and 2 HUGE, HUGE YAY's!!!!!
Speech will continue all summer!!!
OT will continue all summer!!!
Jen and Dawn will both continue services at least until we can re-evaluate and make sure he's getting what he needs from preschool services. We will have to travel to the OT center, but that is the least of my worries! YAY!

6.13.2009

The one with goals...


I don't know about everyone else out there, but I'm not a huge fan of the way goals are written for the IFSP.

It was brought to my attention by our new, competent Service Coordinator, Mara, that his current IFSP has only 3 goals. Anytime we have changed or updated goals, I have signed something to approve them, but I had no idea they were actually supposed to update the IFSP itself. It hasn't been changed at all since June 2008.

So, I am finally in the process of gathering all of his past/current goals to create a bigger picture of where he has been and what progress he has made - for myself - but more importantly for the IEP meeting in two weeks. Even though the goals are written in list form, the goals are 'met' in narrative form - thus not giving me a clear-cut LIST of goals to mark off as done (or ask to re-evaluate if needed). I am a LIST girl. I need a LIST!!

These are his current Goals:

Speech

Will respond to choice questions without any echolalia

Will ask simple who, what, where type questions in 2/3 opportunities

Will comment to gain person's attention like, "look mommy" in 2/3 opportunities

Will request "more" without prompting consistently

Will use pronouns I, me, my, you, your correctly in conversation.

Will protest words other than "no", such as "I dont know" or "stop it".

OT

When He is frustrated, he will be able to throw himself safely on the couch.

He will improve his body regulation so he is not too rough with his sister or other people.

He will be open to new foods instead of the same thing everyday.

He will be able to put his shoes and clothes on by himself.

He will be able to transition to new activities and handle changes in his schedule.

(There are supposed to be 3 more under this category, I will add them when I get them back)

As we discussed his OT goals this week, Dawn brought up a TON of stuff that didn't make it into the goals. Here is the part that is confusing to me and I don't like... They have to make the goals 'functional', but if he needs eg: 'body regulation'; the goal is written with a need for not being too rough with sister. But the discussion talked about everything from going up and down stairs, motor planning, to cutting etc.. We also discussed Fine motor needs, Bilateral Coordination, Low tone, etc.. etc.. etc.... Why do they have to be so specific? I am almost OUT of the whole EI process and I am still confused. DO they not want to work on too many issues at one time?

6.02.2009

Dear Son,

video
One Year since they told me that you have Autism.
I was sad that day.
I thought it meant you couldn't do stuff.
I was wrong.
I thought it meant life would be too hard.
I was wrong.
I just can't imagine my life without you
Perfect creation that you are.
You amaze me.
Your effort amazes me.
What comes effortless amazes me.
A year ago, you could count to 20.
Knew your alphabet.
Could spell a few words.
But you have amazed me beyond words.
You are almost 3.
You can read me a book about Curious George
and you can laugh at him.
You counted backwards from 900 not long ago
and read $60,000 out of a magazine.
And what about the time we played
scrabble? What other mom gets to play
Scrabble with her baby boy?
You do have to work harder
There will be struggles
I have learned so much this year.
about me
about you
about our family
about God.
But your smile...............
Your Beautiful smile.
That's what really breaks my bank!
You are my Beautiful, Beautiful, Beautiful,
Beautiful Boy!