Evaluations and an IEP

Well, we are finally done with all the evaluations and paper work getting ready for Kit's transition out of Early Steps and into the services of the school district.

She will not be going to school, but when a child turns three, the school district takes over responsibility for further intervention. With a catch, of sorts.

Early Intervention's aim is to provide assistance in any area that the child has an assessed need, and in any part of their daily routine from sleeping, to dressing, to bathing, to daycare, to interacting with family members to strangers, physical therapy, occupational therapy, speech therapy, etc. in which they have difficulty. Though the amount and intensity differs drastically from child to child.

When the school district takes over, their aim is to assist a child to cope in an educational setting. All of their determinations are based on how the child behaves, interacts, and attends to tasks and people in an educational environment. When a child is too young to attend school, ages three and four usually, their services are based on what will best help prepare them to cope in an educational environmental. The way they do this is to send an Itinerant Teacher or therapists to the child's home or daycare to work with the child, similar to Early Intervention, but not exactly the same.

That is what my questions and much discussion on the matter has lead me to understand. In the most basic sense: Early Intervention tries to help the whole family, understand and help the whole child, to cope in any environment. School services however, focus on teaching only the parts of a child that don't conform to classroom decorum.

I have no doubt that sentence greatly offends those working in that field. But the fact is, like it or not, that is at it's core what it's about.

During a phone conversation the woman coordinating Kit's evaluations, when I was expressing many of my concerns that the team was not truly getting a good understanding of Kit's challenges because of the very limited, and artificial setting that the evaluations were taking place under, I presented her with a potential future situation that went basically like this...

'I think that Kit could potentially learn to manage to hold herself together enough to make it through a school day. For a while. She probably could manage to learn to get through the day without biting someone or something, or throwing things, and generally going with the flow. But I also have no doubt that after working that hard all day, every day, that the fallout after she gets home, and especially at the end of a week, would be nuclear. Everything that she had to fight against, suppress, and feel, that she couldn't let out is going to explode at home. She would have huge mood swings, her sensory seeking would intensify, and she would have such a hard time finding any kind of balance. How is it helping if she can manage at school, but becomes a complete disaster at home?'

'Well, if that were to happen, we would recommend that you look into private therapy to address those issues.'

She was not being rude, dismissive, or negative in any way. Her tone was sympathetic. And later when we talked about it again in person and in greater detail, she did seem to understand better where I was coming from and my reluctance to put her in preschool. This is not a woman who doesn't care about children or is otherwise 'just doing her job' as the saying goes. I could tell, both from those conversation and others, that she and the whole team really do care. But even if they disagree with the way things work, there is little to nothing they can do about it.

Here are the results of Kit's evaluations.

Her combined cognitive, reasoning and memory scores were sky high. She scored a 116 combined, which I was told is pretty incredible for a child her age. When they do testing for giftedness, the minimum score to meet the criteria for gifted is 115, and the coordinator said Kit got 116 without any of the questions used for giftedness even being applied. Of course even that is limited. Many incredibly gifted people may never meet the test criteria, but nevertheless are genius in their talents.

On one of the tests they couldn't score it because she never hit the ceiling of three or five wrong answers, can't remember which. They finally just stopped because she was clearly exhausted. The age level she stopped at was 5 1/2 years.

During the ADOS-2 evaluation, which is used to look for signs of Autism, she didn't fit the stereotype. She makes eye contact, points, and responds to her name. She responded appropriately to certain prompts. She didn't completely zone out and line up the toys or go spin in a corner. Her hand was planted firmly in her mouth for about the first half, but she's not one that flaps her hands much, just chews on them. She wouldn't speak, other than a couple of whispered phrases to me. Nor would she stray more than six inches from my knees. According to their guidelines, she did not meet the educational criteria for an Autism Spectrum Disorder. 

Of course, they are observing the results of over a year and a half of us and others working very hard with her to help her body and brain feel organized enough to even stand in a room full of strangers and not insist on nursing or hiding, both of which she still wants to do, but has learned to be okay without for the time being, even though her anxiety comes out through behavior and crying later.

Many of my concerns and observations were noted and included in the report, though not an exhaustive list because I forgot my list of concerns at home, and my memory always seems to turn off right when I need it to be sharpest, which was why I had made the list in the first place. Errrghg! 

She did receive an educational classification of Developmental Delay, in the areas of social and emotional development. This is because of her lack of social comfort, even after becoming comfortable in the environment, reluctance to engage with safe adults, as well as her anxiety and difficulty with emotional regulation. They observed her to be extremely shy, and her unwillingness to cooperate with some of the tests poses an educational challenge. When I met with her new teacher this week to set up the Individualized Education Plan (IEP), she said, 'they can know it all, but they need to be able to answer when called on, or (eventually) take a standardized test, because that's the way the system works'.

I understand that view. Of course my view is, 'then change the system!' Obviously, not her personally, but in general. But that's not happening anytime soon, and obviously, I'm not looking to public education to guide my kids into adulthood. But I kept all that to myself. 

I may not entirely agree with the process, but I appreciated the people that were involved. We were treated with dignity and respect throughout. Everyone just loved Kit! It's impossible not to! And I did feel like our experience, hard work, and concerns were taken seriously, which I deeply appreciate.

Kit starts work with her new teacher September 4. Her teacher will come to the house, once a week, and work with Kit for 30 min. She will work with Kit at sharing, taking turns, overcoming obstacles and frustrations, and verbalizing her thoughts, needs and feelings consistently. Doing all of this with a person who is not related to her being the key.

So that's that. And we move into a new stage of life with Kitty Bitty.

We are still exploring some other options to help in the area of Occupational Therapy, which we still feel she strongly benefits from. So more on all of that later.

Happy Wednesday everyone!