Observations

Yesterday our ABA Case Manager went to our son's school to be our eyes and ears.

We had received an extremely positive report from his Teachers last week at the P/T Conference such that I immediately issued the following ecstatic e-mail to friends and family:

"Dear Family and Friends,

We wanted to share the good news with you so that we can all rejoice together and give praise to our marvelous and wonderful God who makes all things possible…

Tonight we met with our son's Teachers. (He currently is in an inclusive atypical – all 5 children on the Autism Spectrum and a “blended” classroom – ½ typically developing; ½ with special needs/English as a second language.) They asked us for permission to have him re-evaluated in all areas because they have seen that, despite his being non-verbal, he is functioning at a much higher level than the previous years and has made significant strides in every area of his special needs.

What will happen is that he will, over the next 60 school calendar days, be evaluated by the current school teachers and therapists and they will asses what level he is at in the hopes that (they suspect) they can recommend that next year – when he enters Kindergarten – he can be placed in a typically developing child classroom with a full-time, personal, aide. This will be reviewed by his “home” school; they will run their own tests/observations as well, make their decision and then – if he is approved – create an Individual Education Program (IEP) for him in their school.

By the way, the school is only three blocks from our home and – I have to admit – I have always longed to walk him back and forth to school as the other parents do in our neighborhood.

We could hardly believe what we were hearing! This is something we only dreamed would be possible until the later years of grade school or even junior-high!

He is doing so well with his AT (Assistive Technology) device (which enables him to speak by pressing particular buttons) that he has been participating, with relevance, in classroom activities and having “conversations” with other classmates! He also incorporates his sign language and uses the PECS (Picture Exchange Communication System) when he cannot use the device to convey what he is trying to say.

They feel that, although he is still has ASD, he is only in a mild category and that his current inclusive classroom situation is too restrictive and is holding him back/teaching him inappropriate behaviors. They have observed that, in his blended classroom, he is modeling peer behavior, learning appropriate behaviors and responses, socializing in very reciprocal ways and has accelerated in his learning/participating in activities. Yes, there are still some setbacks and he can be “naughty” or uncooperative but they also feel it is because he just needs to learn how to slow down, finish a task before moving on and that he is often “bored” with the activity because he as already mastered it!

I am bursting with joy and thankfulness! I am SO grateful that we have done all that we have to make it farther than we even imagined and I am praising God that we had the resources to do so and, especially, the people around us (therapists, etc.) to make it all happen. These have been an extremely challenging three years but, looking at it with this possibility lying before us, worth all the heartache.

Please pray that he does exceedingly well during this testing period and that it truly is the right decision to have him placed in a typically developing Kindergarten next year. If that is not the case, please pray that we find the right educational program to fit his individual needs next year because it is very clear to the Teachers and Therapists that are working with him that the School based “STARS” program would not be the right fit.

Thank you for your consistent love, prayers and support! We cherish them and you tremendously!!!"

I just received an email from our Case Manager with her 2-1/2 pages of observations and have very mixed emotions...she wrote: "Overall I was happy with the progress I saw from the last school visit I went to...He handled himself very appropriately in both classrooms. He listened and paid attention to what was being told of him to do (sit down, stand up, throw it away, go to the bathroom, wash your hands, get your coat, hand up your coat). I didn’t see him paying much attention to the children in either classroom, rather to the teacher and aide, but again that could have been just today. He seemed much more vocal in the first classroom. It was during lunch and speech, but I saw more of a need to communicate through sign, pointing and grunting, speech, and only hit the buttons on the device. I do think his preferred form of communication is sign. When he used the device it was when he was instructed to, or like I said when he seemed to want to play/explore not really to request anything independently.

The second classroom he really seemed to go with the flow. He followed what others were doing, but didn’t seem to really engage with the other kids (participate in song, good morning handshake, listening when they spoke). I am not sure if today was an off day for him in regards to engaging with others, but this is what I saw. He seems very happy, I did not see ONE behavior issue in either classrooms. He seems to be happy in the place he is. He didn’t seem stressed or confused, he seemed very confident with everything and everywhere he was."

From what I understood his Teachers to be saying - at the Conference - I guess I had envisioned a more positive assessment of his performance in the classroom (especially with regard to the AT Device) than her report stated.

I'm grateful for the more objective observation and her ability to see him as a "patient" rather than a parent (whose judgment can be clouded because of their love and pride); however, I'm very worried that the Teacher's assessment may have been too positive too soon. I'm now more cautiously optimistic about what next year will bring and anxious that the test results may be "padded" in his "favor" and he'll end up floundering next year in a typically developing child Kindergarten.

I'm disheartened but not dismayed...I think I let myself fly to high and I'm finding it's a terrifying, longer, drop down than I expected.

Playground Etiquette

What a horrendous week...traveling is not good for every soul; especially those inflicted with Autism. Although we have been living on Planet Autism for nearly five years now, it never fails to take us by surprise the depth of distress that our son experiences from time to time.

Without fail, each time we travel, it takes him up to 72 hours to decompress (get back into the routine) upon our return home. This week...it has taken MUCH longer and it nearly broke me.

In my son's defense, there were a lot of transitions while we were away, he didn't sleep well at all and, when we returned, three of his therapy sessions were canceled and his school schedule was different (a half day on Thursday and Halloween activities throughout the week).

Halloween...a "beloved" holiday by most - I have VERY fond memories as a child of Trick-or-Treating with my best neighborhood friend in my lovingly hand sewn costumes by my Mother. I don't think the festivities or concept of it all even remotely was understandable to my son. He just delighted in being able to go on every neighbor's porch and ring every doorbell without restriction.

He had more meltdowns and defiance this week than I can recall. It was taxing on both of us as parents and we prayed fervently for relief and a better week on the horizon. He's getting so much bigger now and, physically, these episodes are getting harder to help him through. He's not even five yet and over half my height and weighs 45 lbs. What am I going to do when he's too big to pick up or, God forbid, he pushes me away and won't let me console him with deep pressure input?

Yesterday, while we were at the local mall play area, my son was happily (vocally) stimming while he played and a little girl came right up to his face and shouted "be quiet" along with a few other things. When she left his presence to go down the slide, and he followed after her, she kicked at him before going down the slide. When she bounded back up the stairs, I stopped her and firmly (but - truly - soft spoken) said to her "Excuse me, little girl, you don't have to be mean to my son...he cannot speak and does not understand."

Moments later, I saw her lamenting to her mother and she never went back on the play equipment...she gathered her shoes up - with a very sad face - and left after five minutes.

Initially, I felt justified. Today, I feel like I could have gone further and handled it "better"...coming over to explain his disorder and trying to gently educate her on tolerance/acceptance of others.

I'm torn this morning and not sure what to do with these emotions. It's not the first time I have encountered a situation like this and it's not even the meanest thing some little kid has said or done to him at a playground. He's not even 5 yet...what am I going to do as people get crueler and treat him without understanding?!?

God, I love my child but I hate Autism wholeheartedly.